Helping women with chronic illnesses

A Holiday Time Re-Post

Originally posted 12/20/2010 with the title:

Family, Facebook, and Frenzy:
A Holiday Infertility Meditation

Today’s guest blogger, Dr. Diane Rasmussen, is chronically healing from multiple illnesses including Stage IV endometriosis, polycystic ovarian syndrome (PCOS), hypothyroidism and lipo-lymphedema. She has never been pregnant. Her inability to conceive naturally was confirmed when she was forced to have both fallopian tubes removed (one in 2008 and the other in 2009) due to endometriosis-related complications. A professor, she loves both research and teaching.

As Jeanne noted in her wonderful last post, this is a stressful time of year. We’re told (and, for some reason, we believe) that we’re supposed to maintain a big smile full of magical holiday cheer while we host a delicious dinner for friends and family, bake fattening cookies for the office party, buy the perfect gift for the dog groomer, play Santa to our kids…

Wait a second! I can’t do all that! I mean, I don’t have kids!

“Why don’t you have kids?” a woman I had just met asked me recently.

“I can’t have them due to severe endometriosis,” I replied tersely. You’d think I’d be used to this now, I thought to myself. But I never get used to that question. I also never get used to the fact that people with children sometimes assume my schedule is more flexible than theirs, or the fact that people who don’t know the real story probably think my husband of seven years and I are waiting for some inconceivable (pun intended) deadline to start “trying,” or the fact that my friends with children must think I really want to see Junior’s mug-shot-of-the-day every time I log in to Facebook. (Note: if you are my Facebook friend and you do that, I may have hidden your updates some time ago.)

However, those are all mere annoyances. Speaking personally, the time it hurts the worst is when I go to a worship service. All the children are asked to come to the front of the sanctuary to hear a story, and then we have to sing to them as they head to their classes after the story: “Go now in peace/may the spirit of love surround you/everywhere you may go.” But I can never sing: by the time the story is done, I am crying too hard to sing, although I do hope love and peace surround them. It’s not their fault I can’t have a child, after all. That said, their presence makes it difficult for me to attend services, despite the (theoretical) idea that one goes to worship services for spiritual renewal.

Could it get any worse? Cue the holidays. “Christmas is for children,” we’re told. The kids are performing holiday pageants, the toy department at your favourite discount store is overflowing with games and action figures, and your co-workers are all conversing excitedly about the trips they and their kids are taking over the break. Or their kids are coming home from university for a few weeks. Or their kids are bringing the grandkids home. Or whatever.

If you are reading this post seeking answers for how to get through the holidays, I’m not sure I have any concrete advice for you. I struggle with it myself, and I just want December to be over so we can get back to “normal” life. As a childless-by-choice friend suggested, the only sensible ways to get through the holidays are either (1) remaining under general anaesthesia through January 3, or (2) checking into a luxurious hotel with no phone, good books, and room service.

Just don’t forget the underlying message: especially during the holidays, family makes everything worthwhile, and if you don’t have a family of your own, you have nothing.

Wait a minute. Is that true?

I have a supportive husband who sees me as a person rather than a mere baby-making machine, wonderful friends, a Chihuahua who curls up by my side every night, and a rapidly developing career that I love – so many reasons for gratitude! On the other hand, I have multiple chronic illnesses that frequently inhibit me from living life as easily as others do, and I lost my wonderful dad to frontal lobe dementia in May 2010, an absolutely devastating personal loss that will never leave me.

But no matter how I examine my life, no matter how much I ponder my strengths, my weaknesses, or both, I always come to this conclusion: I am more than my (in)ability to have children. And, if you want to be pregnant but are not, you are so much more than that too.

We are definitely the sum of our pasts and our present selves. Sadly, I am watching so many people I know struggle. I know people who have had multiple recent deaths within their inner circles, who have gravely ill spouses, who are going through divorces, who may not be able to see their children (even though they have them), who simply cannot keep up with the societal expectations of the season, and so on. So many of us are just doing the best we can to get through it all right now, whether we can’t conceive, or the fruitcake got burned…

Lately, I’ve been struck by the devastating situations that children face at this time of year (and all year, for that matter). My nightly news broadcast keeps reporting that local charities do not have nearly enough toys for all the children that can only get holiday presents through donations. I have also seen a series of advertisements for a foundation seeking money to buy medications to treat leprosy in impoverished children. So many parents worldwide do not have jobs, or homes, or grocery money.

And then I think, I’m not rich, but I do have a job, a place to live, and a stocked kitchen. And I suppose I could think, It’s not fair! I could provide for children more easily than they could, and they have them! But, in actuality, I’ve been thinking, you know, there is more than one way to “mother” or “father” in this tragic world, and we can all start today…

As I conclude this post, I want to return to the subject of my wonderful dad, who would have turned 68 on December 15. He worked hard, played hard, and made people happy with his kind nature and silly jokes. He exemplified the kind of person I strive to be, and I hope he is watching me from wherever he is with pride. The twist? He was my adoptive father, but I never thought of him that way, and I’ve never known a more loving dad. Of the countless lessons I indirectly learned from him, the most important was that your “family” is by no means limited to blood. I’m not suggesting adoption is the answer for everyone, and I’m not diminishing the devastating loss we all feel with infertility. But I wouldn’t exchange my life (or either set of parents) for anything.

That said, I do believe that we are all one family on this planet, and as my favourite band U2 once brilliantly sang, “We get to carry each other,” a fact that us humans frequently fail to remember. And this particular family is what makes everything worthwhile, and if you don’t have your Earth family (and, hopefully, some love and peace to go with it), then you have nothing.

A fate even worse than not being able to post your own sonogram photos on Facebook.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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November 22, 2012   2 Comments

Lesson Learned: The Importance Of Pacing

At the risk of sounding like a broken record, things have been overwhelmingly busy for me in recent months. I have been a ‘busy bee’ to the point that I have really tested my limits.

Unfortunately, this busy schedule has resulted in me having little to no time to be online. There are many people I am long overdue to interact with on this blog, on social media, or elsewhere. Due to circumstances out of my control, I just haven’t been able to spend the kind of time online that I used to (or that I hope to again if things ever calm down). I have had to focus my time and energy on my life offline. While I know this has been a necessary modification to how I allocate my time, I recognize that there are people I know (from interacting online) with whom I haven’t had the opportunity to talk in quite some time. Thank you to everyone who has been patiently waiting for me to return messages and I appreciate your patience more than you’ll probably ever know!

Rather than spend time recounting what I’ve been up to offline (the unusual photo above seemed to fit how I have been feeling – trying to keep everything afloat and make sure everyone is OK lately), I’d rather focus on my attempts to get back into some sort of more frequent schedule for updating this blog. While I doubt I’ll be able to write here as frequently as I once did (at least in the near future), I’d like to make a concerted effort to write as frequently as I can. At the same time, I don’t plan to just write for the sake of writing (while not saying very much). My hope is to write about some of the core topics that have built this blog in the four plus years I have been writing it.

So, please continue to bear with me as I make adjustments to how I divide my time between my “online world” and my “offline world”.

We recently managed to fit in a day in the Adirondacks. It sure helps to slip something fun into the schedule amidst hectic times!

The busy time hasn’t been all responsibilities, appointments, errands, etc. We have managed to carve out some fun time too. This has really helped us deal with everything else that has been going on.

In addition to coping with flare-ups (especially of fibromyalgia and migraines recently), I have been doing physical therapy to heal my ankles. Back in May, I did a large amount of unexpected walking one day. My ankles were sore all summer but I managed to get by. However, in July the pain in my ankles became severely exacerbated. My primary care physician referred me for physical therapy for bilateral Achilles tendinitis. One ankle is now much better (physical therapists are amazing!) but I am still in physical therapy working on getting that other ankle back to normal. Unfortunately, I did barely any biking this summer because my ankles were so sore.

My physical therapist has given me the green light to gradually try some biking. Unfortunately, with the cold weather heading in my opportunities to ride outdoors are becoming limited. Currently, I am looking into whether we can find an inexpensive way to mount my bike on a trainer indoors. My husband has a bike trainer that might fit. We just need to see if it will work for my unusual bike. It’s frustrating that I have had so much pain for several months now simply because I walked too much for my body to handle. I now understand that a sudden increase in the amount or intensity of an activity can trigger Achilles tendinitis. I wasn’t thrilled with the cost but I invested in some sneakers with good arch support (at the suggestion of my physical therapist). I have to say that I think the sneakers are helping me recover more quickly. My body simply wasn’t prepared for the amount of walking that I did. I have learned the hard way not to take on that kind of walking when I have been sedentary due to my illnesses. I pushed myself too hard and the Achilles tendinitis is my body’s way of letting me know to be more careful in the future.

Despite my infrequent blog posts and lack of communication with my online friends, the number of readers subscribing to this blog is higher than ever before. I can’t tell you how much it means to me that so many people have patiently stuck by me this year. It has really bothered me to not be able to write as frequently as I used to. It helps so much to know that people don’t think I have abandoned this blog. While I’ve had communications far and few between (anytime someone posts comments on my blog about having suicidal thoughts, I make sure to reach out to them regarding suicide first aid resources), I hope that everyone who reads this blog knows that I care about them and truly appreciate their patience and kindness while I’ve been sorting out how to prioritize my time in recent months.

Over the years, I have learned that I need to pace myself in order to prevent a worsening of symptoms. In the case of the last few months, that has resulted in less time writing. Hopefully I can increase the frequency of blog posts in the near future. Thank you to everyone. Please feel free to leave comments on this or any post you like. While my response time may be slower than in the past, I will make every effort to get comments posted and replied to as quickly as possible.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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October 24, 2012   2 Comments

World Suicide Prevention Day: September 10, 2012

Monday is World Suicide Prevention Day. Suicide prevention is a topic I’ve written about many times in the past. While suicide may be an uncomfortable topic for some, I feel compelled to talk about it because I have encountered several people online in these last few years who struggled with thoughts of suicide. I took a class two years ago to learn about the topic of suicide prevention. What I learned in that class strengthened my resolve to do my part to get the word out about suicide first aid resources.

After taking a look at the latest statistics for the traffic that reaches my blog, I see that it includes people from 172 countries. Therefore, I want to emphasize that suicide first aid resources are available in many places all around world. In the last few years, I have interacted online with people who were having thoughts of suicide that lived in parts of the world far away from me. I found this map of resources to be extremely helpful in identifying the suicide first aid resources nearest them.

Thinking of learning more about suicide prevention? I found the safeTALK class to be extremely informative. It is designed for laypeople (“a training that prepares anyone over the age of 15 to identify persons with thoughts of suicide and connect them to suicide first aid resources”). For more information about a training class near you, see this link.

Suicide prevention (and education about it) is vital. This wasn’t always a topic I discussed openly – offline or online. Over the past few years, however, I have encountered several people through my work online who were experiencing thoughts of suicide. There are many other people with whom I have not interacted directly but who have reached the suicide prevention posts on my blog via some heartbreaking search phrases. While I may not have interacted with them directly, the search strings that led them to my blog left little doubt about the fact that suicide (i.e. suicide prevention, suicide survivor resources, suicide associated with illness) was a topic that somehow impacted them.

Stigma – and other barriers preventing people from finding and utilizing the resources available to help manage crises – cannot be allowed to stop people from getting the help they need to stay safe. Please join me in spreading the word about suicide prevention. Not sure what to say or how to say it? Feel free to simply share the link to this post on Facebook, Twitter, Google+, or even your own blog if you have one. Let’s get the word out about suicide prevention. Help is available. It can be very difficult to find or seek out assistance when one is having thoughts of suicide. Getting the word out about the abundant resources available can make a difference. Please help spread the word about this important topic. Thank you.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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September 7, 2012   2 Comments

Magnificent, Magical, Mysterious Music

Many times before, I have written here about music. Recently, I have been under a great deal of stress and music has been enormously helpful to me during this time of my life. Music can be therapeutic, emotional, inspiring, and healing. My husband drew my attention to this fascinating video about music. It is approximately 20 minutes long. I found it to be well worth the time.

Music is an important part of my life. I’ve been reading about music therapy (something I intend to write about in the future). It really is incredible how powerful music can be and how much potential it has to help people. I hope you’ll enjoy this video clip as much as I did.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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July 26, 2012   No Comments

Chronic Illness And The ‘Groundhog Day’ Effect

Have you ever seen Groundhog Day? It’s where the main character keeps waking up to find the same things happening over and over. Do you ever feel like you’re having a similar type of repetition of patterns? In this case, I don’t mean experiencing the same symptoms over and over so much as how it is to interact with others when this is the case. How do the patterns of interaction repeat?

In addition to thinking about the “Groundhog Day Syndrome”, I’ve been thinking more about how looks can be deceiving for people living with chronic illness(es). I’ve written about this before on many occasions, such as here in Perception Deception.

Sometimes I feel like I’m experiencing a Groundhog Day syndrome of sorts. Sometimes I look at what’s happening in my life and it’s so similar to what has happened in the past that I can’t get over it. In the context of chronic illness and its impact on my life, this can manifest itself in a variety of ways.

For example, I can spend the time and energy explaining my illnesses, symptoms, and limitations to someone – and I can think that the message I was trying to convey was clear – but in the end it may become evident that the time and energy I spent on this was in vain. What I said may not have mattered much… if at all. Whether I didn’t get my message across or it, for whatever reason, wasn’t accepted by the person(s) I was attempting to communicate with, my efforts may not have much impact.

When this happens, I may get frustrated, hurt, and even angry. If I have done my best to explain what I can and can’t do without jeopardizing my health and/or exacerbating my pain levels and I encounter situations where people expect me to find a way to do things I shouldn’t be doing anyway, it really hurts… both emotionally and physically.

I have learned a great deal over the years about setting healthy boundaries and saying no to things that I know will worsen my health. However, there are still plenty of situations where I can’t control all of the circumstances around me. If the rules of the game are changed in the middle on me, no amount of preparation or talking in advance matters much. If I find myself in a situation like this, I find it extremely upsetting. I know I’m not alone in this because I’ve talked with hundreds of other chronic illness patients who have had experiences like this at one time or another.

For me, it is beyond exhausting, beyond frustrating, and beyond painful to find myself feeling forced into a situation that is bad for my health. The problem for me isn’t that I don’t know how to say no. I do. The problem isn’t that I’m willingly pushing myself way too hard either. I’m not. Sometimes despite one’s best efforts to avoid over-exertion or (avoidable) triggering of symptoms, one finds him or herself in a situation where there is no way out. In other words, if one agrees to an activity but that activity unfolds in a very different way than planned, it is sometimes impossible to simply discontinue the activity mid-stream.

There is no magic answer for this type of scenario. I fully realize that no one will be able to post a comment suggesting a way to avoid such situations. I guess I am writing this to vent some deep frustrations about it. Sometimes it helps to just let it out. I guess I feel like I have worked too hard over the last many years with both Traditional Western Medicine doctors and alternative medicine practitioners to take it lightly when my symptoms get needlessly exacerbated – which sends me backwards in my healing process rather than forward. I am not interested in moving backwards. I wish to move forward in the healing process. Having setbacks that could have been avoided frustrates me immensely. I know there are patients out there who can relate on some level to what I’m talking about.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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July 7, 2012   2 Comments

Father’s Day: Infertility, Quality Of Life – Research On Couples

In thinking/reading about Father’s Day and infertility, I came across an interesting research study. I thought I would share the link to it here for those who are interested. Too often, researchers have not looked at the couple as a whole (when studying the impact of infertility on quality of life).

To read the abstract, click:

The full text article, ‘Congruence of quality of life among infertile men and women: findings from a couple-based study’, can be accessed:

Father’s Day can be a time of grief and sadness for those who have suffered loss (such as infertility). If someone you know is struggling with such holidays, consider asking if there is anything you can do to be supportive. Each individual and couple is unique. The best way to know how to provide support is to ask.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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June 17, 2012   No Comments

When It’s All A Blur…

Thus far, this entire year has been a blur of crises, problems begging for solutions, and health issues. I cannot believe it’s already June!

What does a person do when everything becomes a blur? When events unfold so rapidly that it feels impossible to get centered and to get one’s bearings? At what point does a person have to decide to discontinue working on a crisis situation because a satisfactory resolution is impossible or because one’s body and mind simply can’t handle the continued focus on that crisis? What happens when problems simply cannot be solved… even with the best minds working very hard to reach a resolution? What if creativity, perseverance, and tenacity simply aren’t enough to reach a satisfactory resolution? What if sheer will isn’t enough? How does one decide when to back off of a project to prevent endangering one’s health? At what point does one conclude (and how is that conclusion made?) that one’s health is suffering due to a given situation?

These are some of the questions I have been struggling with these past few months. How far can I push myself? How far should I push myself? Where are the boundaries? What is the likelihood that my efforts will help solve the problem at hand? Even if my efforts look like they might make a difference, at what point do I need to stop what I’m doing anyway to protect my health from further deterioration?

There are no easy answers. I have found it very difficult to decide when to forge ahead and when to back off. Having lived with chronic illnesses for 30 years now, I am a fighter. It’s often hard for me to know which fights I have to walk away from. This is especially true when health-related situations are involved. It’s really, really hard for me to back off from trying to solve/address a health-related problem. However, I have been coming to terms with my need to do that for a given (offline) situation. It hasn’t been easy but I am at peace with the fact that I have been transitioning away from a situation that is too complicated for me to solve… if, in fact, anyone can do so.

In the meantime, I have really missed writing here as often as I used to. The fact of the matter is that the blurry keyboard pictured above isn’t too far off from how my keyboard looks to me at times lately. No matter how much I want to write, sometimes I just can’t lately with everything that has gone on. There are not enough hours in the day to get everything done. Exhaustion can do a number on one’s body. I have been trying hard to “practice what I preach”, so to speak, and to really listen to my body. Sometimes I’m better at doing this than others.

When my blog recently celebrated its 4 year anniversary, I wanted to do more to celebrate the occasion but I didn’t have the time or energy to implement any of my ideas. I made peace with this and wrote a simple post that day. I was just thankful to have managed to get it posted on the right day, to be totally honest. I decided it wasn’t worth stressing over and just did the best I could.

Lately, I’ve been looking for the light at the end of the tunnel, so to speak.

All I know for certain is that I miss my old routine and my former schedule for writing here and I would like to “get back to normal”… whatever “normal” is. Will I keep the pace I had before? Not likely. However, I would like to gradually increase the amount of writing I’m doing here. Thank you, from the bottom of my heart, for sticking with me here – despite my infrequent blog posts lately.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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June 12, 2012   2 Comments

Four Years: Learning, Growing, Sharing, Caring

A year ago today, I wrote Three Wonderful Years! to try to begin to convey how truly amazing the blogging journey has been for me.

At that time, I was having difficulty finding as much time to be online and to be writing as I had become accustomed to and I wrote that post as a brief summary. Little did I know then that I’d feel even more pressed for time now than I did then. I have no shortage of ideas to write about but due to a whole host of factors happening offline, I really can’t do justice to a decent summary now. Therefore, I will just take a moment to acknowledge that today is the four year anniversary of when I began writing a blog. It has been a rewarding experience in many ways. The mutual support for patients with a variety of chronic illnesses, the exchange of information, and the crucial feelings of validation patients give one another are so important, so needed, and so appreciated by so many people.

As much as I wish I could write more now, I have the comfort of knowing that the people who read my blog understand. I don’t have to explain how sick and busy I am because it’s understood by those who are reading it. So, I’d just like to close by thanking all of you. The chronic illness community is a wonderful place filled with people who care deeply about others and who generously share their time and knowledge with others. I am honored to be part of this very special community.

Last but certainly not least, the topic of suicide prevention has become an important one here on Chronic Healing and I would be remiss to leave out a mention of this. Every single day, this blog receives traffic from people who have searched online for information about suicide prevention and related topics. If you or someone you know is having thoughts of suicide, please make use of the abundance of trained suicide first aid personnel who are available at hotlines around the world. Please click here for more information on how to find such resources in your area. Help is available. The more I write about this topic, the more people find my blog when they search online for info. The more people find my blog while searching on this, the clearer it becomes to me that this is an epidemic. Please encourage anyone you know of who might be helped by such resources to make use of them. The trained staff at these hotlines are there to help.

Thank you, everyone, for making the last four years so special. I can’t begin to express my gratitude for having had the opportunity to get to know so many amazing, thoughtful people who care so very much about their fellow patients!

Here is to the beginning of year five in the blogging world!

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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June 2, 2012   6 Comments

The Chronic Illness Community And You

Let’s start with a definition of community. It’s a word people (healthy or not) use often – but the meaning of it is quite special to those of us who are living with chronic illnesses and interacting with others who are living in similar circumstances.


A social, religious, occupational, or other group sharing common characteristics or interests and perceived or perceiving itself as distinct in some respect from the larger society within which it exists (usually preceded by the): the business community; the community of scholars.

As just about any chronic illness patient can probably tell you, the value and support of the chronic illness community is just extraordinary! Most people I have met in the 30 years I have been living with chronic illness find the validation and phenomenal compassion of fellow patients to be of utmost importance. The chronic illness community provides irreplaceable understanding and it provides for mutual support.

There are times that the only people who seem to be completely able to identify with the struggles faced by persons living with chronic illness are those who are living it themselves. This is where validation becomes so important. Healthy loved ones, friends and co-workers who try their very best to understand the daily challenges of living with chronic illness may, ultimately, not be able to do so. This is where support from people who “get it” becomes key.

As far as compassion is concerned, our chronically ill peers have the ability to empathize since they can relate firsthand to symptoms or experiences. This isn’t to say, of course, that our healthy loved ones or friends or co-workers don’t care. Obviously a great many of them do. (Granted, most people living with chronic illness have had some experience in the workplace that involves people who are not very compassionate or understanding). The majority of healthy people around us, in my experience, do make attempts to understand and do try to show that they care. (Realistically, there will always be people who don’t fall into this category but I think most people try in their own ways to show their compassion).

At the end of the day, though, I believe the reason that chronic illness communities of all sorts (online and off, support groups, messages boards, blogs, Facebook groups or other Facebook interactions, Twitter niches for chronic illness patients to interact, etc.) are so valued, so highly utilized, and so appreciated by such large numbers of patients all stems back to these core elements… validation and support.

So very many of the experiences I have had firsthand – and those I have witnessed other patients having – are examples of such an excellent outpouring of concern, caring, and empathy from patient to patient in all sorts of situations. I feel extremely fortunate to have gotten to know so many wonderful, thoughtful people on my own journey!

The chronic illness community truly is an amazing group of people. We are fortunate to live in an era where technology enables us to connect with far more people than we could have in years past. At 43 years old, I remember the pre-Internet days of searching for medical information and trying to find other people living with the same symptoms as me. It’s wonderful to have the Internet to enable us to make far more connections than could be made otherwise… with people the world over!

What do you appreciate about the chronic illness community? How have you benefited from being a part of it? How does it make you feel to be able to give and take information, engage in mutual support, and even help fellow patients cope with the stress of living with chronic illness(es) and chronic pain?

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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RT @jeanneendo: "The Chronic Illness Community And You"

May 24, 2012   4 Comments

Mother’s Day: Tips From RESOLVE Chat

On what is the eve of Mother’s Day (at least here in the United States), the link below may be helpful to some readers here:

My thoughts go out to anyone who is struggling (or has in the past) with infertility, pregnancy loss, insensitive comments from people, and the time/energy/stress involved with investigating, paying for, and pursuing family-building options (of all sorts) in the face of infertility. My thoughts go out to those who are childfree-not-by-choice.

Given the statistics, it is highly likely that you know someone (or multiple people) who are struggling with infertility. Many people dealing with such struggles are very cautious about sharing this information. If someone has entrusted you with information about their struggle with infertility, I think it’s important to be be mindful of how excruciatingly painful it can be. Mother’s Day is one of those especially difficult times for many. Please try to remember those who are coping with such situations.

Last but not least, Mother’s Day can be difficult for others who are not struggling with infertility. For those who lost a mother or a child, it can be a very painful time. Each year when I do a Mother’s Day post, someone I know online points out another life situation that makes this weekend emotionally difficult for them. There are many such situations. The point I wish to make is that I think it’s very important to remember how difficult this weekend can be for some people and to support them in any way possible. Thank you.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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May 12, 2012   2 Comments