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Flying With Broken Wings: How Chronic Illness Affects Our Relationships
Those of us who suffer from chronic illness know only too well how taxing it can be on our relationships with friends and family. How can we explain our disease to them so that they will truly understand? What can we learn from our own experiences and those of others?
When it comes to explanations, I think it helps to keep it simple, something like:
“The thyroid is a butterfly-shaped gland in the neck that produces hormones that control the whole body.
I have an underactive thyroid (hypothyroidism/Hashimoto’s thyroiditis) which means the processes in my body are slowed down. For me personally this involves symptoms such as (add your own symptoms)
Or
I have an overactive thyroid (hyperthyroidism/Graves’ disease) which means the processes in my body go into overdrive. For me personally this involves symptoms such as (add your own symptoms)
I’m on medication for it, but because there is no cure for an underactive/overactive (delete as appropriate) thyroid due to autoimmune disease/thyroid cancer, I may still experience symptoms as my hormones fluctuate.”
And if they want more information, you can even direct them to patient advocate Mary Shomon’s website or send them her free Ebook.
After all, a good relationship is based on communication, so with this explanation we can hopefully increase our loved ones’ understanding of what we are going through. My fiancé and I both have Hashimoto’s, but perhaps because I also have active Epstein-Barr virus I seem to spend more time exhausted and bedridden than he does. This invokes in me an inherent sense of guilt because at times I have to rely on him to cook for us and do the shopping, even though I know he’s not fully well yet either.
Our sex life has basically gone down the pan because thyroid disease stole our energy and libido. In addition, intercourse has always been extremely painful for me. My new gynecologist said it was because of a skin flap that needed to be removed. He did so and, after I recovered from the op, we were looking forward to finally trying it out again, but now we both have systemic candida (common in Hashimoto’s patients due to our weakened immune systems), so that’s kind of scuppered our plans. On top of that, I suffer from vaginal dryness, a symptom that is very common, but rarely discussed. I, like many I have talked to, have also found that the thyroid-related weight gain impaired my sex life. The more weight I gained, the less energy I had and the less agile I felt. With the new meds, I am slowly getting this under control, so that we can hopefully someday actually use our Kama Sutra book!
It seems I am not the only one whose hormones have sabotaged their fun between the sheets. I talked to one of our lovely thyrellas “C” who told me that thyroid disease has made her very self-conscious about her body: “When my husband and I have sex, I tend to cover up or even keep my shirt on. He tells me he doesn’t care but I feel disgusting.” Sadly, her husband fails to understand when she feels ill or tired and, in his frustration, often brands her as a hypochondriac. Her family (like my own in the past) sometimes make comments about her weight fluctuations, but it’s encouraging to see that her mother does understand and sticks up for her when this happens. As for friendships, “C” has had to say farewell to some fair weather friends who refused to be understanding about her disease. Chronic illness really makes us realize who our true friends are.
Another thyrella “L” is a single mom in her mid-40s who suffers from Hashimoto’s and, lately, debilitating foot pain due to plantar fasciitis (which may well also be thyroid-related). “L” brings up a good point that I think many of us can relate to: “It’s hard for my daughter to understand what is really going on with me because visually she cannot see my pain. It would be easier if I were battered and bruised on the outside so she could better understand, but instead I am battered and bruised on the inside.” Indeed, fatigue and many aspects of thyroid disease do seem invisible and incomprehensible to non-sufferers.
“L’s” teenage daughter gets frustrated when she is told to do her chores, but her mother is resting. Her mother feels guilty because of this: “I have to admit that it isn’t fair to her, she deserves the mom I used to be. She is just starting puberty and I need to be there for her physically, emotionally and provide the stability that any girl needs from her mother.” Illness puts us in the tricky position of feeling obliged to fulfill our duties, but being unable to. However, guilt is not the answer. It’s more about acceptance and educating those around us – as “L” puts it: “I have found that sitting down with her and explaining to her what hypothyroidism and plantar fasciitis is helps her understand some and also that when the fatigue and foot pain attack that I need to rest and to get off my feet ASAP, that this is something that is beyond my control.” “L” and her daughter work as a team to get the weekly shopping done as fast as possible before “L” is struck down again by her foot pain and fatigue and “L” asks her daughter not to argue when she is feeling this way as she is simply not herself.
“L” is truly grateful for her daughter’s understanding, which is I think a lesson to us all: “Most importantly I also try to remember to graciously thank her for all of her understanding and help when she chooses to be kind, understanding and helpful when the fatigue and the foot pain occur.” In addition, “L” is “cheered on” by her beautiful dogs and cats: “When I am feeling tired, exhausted and in pain they seem to know. They either do the silliest things that bring a smile to my face or snuggle up to me when I am down and out. They each bring me so much comfort that it helps me get calm and centered.”
For some of us, it feels like our family doesn’t care enough, but for others our family cares a little too much. This was the case for “M” who was diagnosed with thyroid disease 32 years ago. “R” (her husband) has a fussy way of caring. He researches into everything and believes everything he reads. When I was pregnant with “W” he wrote a big list of vitamins for me to take on certain days.” Doctors advised “M” against breastfeeding as she was on Carbimazole tablets for Graves’ disease that were thought to interact with breast milk. Her hubby freaked and called the doctor as he wanted his daughter to be breastfed, but “M” decided to stick with her tablets as they were working well and went on to bottle-feed her daughter. Ironically, years later, thyroid patients were given the all-clear for breastfeeding when taking Carbimazole.
It was thanks to “M” that her mother finally got diagnosed with hypothyroidism. She was suffering symptoms which her previous doctor ignored, blithely stating “You’ve got enough health problems without adding thyroid to the list!” “M” wasn’t having any of that and persuaded her mother to see her own doctor for her weight gain, bloating and lethargy. He put her on Levothyroxine. Another inspiring story. We should never be afraid to do whatever we must to get the right treatment for our loved ones.
Like myself and my fiancée, my sister-in-law “H” and her husband-to-be “S” both suffer from chronic illness. “S” has Hashimoto’s and “H” has chronic fatigue, celiac, fibromyalgia and active Epstein-Barr. Based on this and her other health issues, we believe she has thyroid disease and are fighting to get her finally diagnosed. She’s been ill for most of her life, but hasn’t received satisfactory treatment: “My medical coverage in the new state (Mississippi) is horrid with only two doctors to choose from. One suggested a 300 dollar a month juice he claimed would make me better in three months. Well let’s say simply it didn’t cure me.” Each doctor’s appointment with “H’s” new and incompetent doctor is frustrating beyond belief as he refuses to do the tests or prescribe her the meds she needs and even ignores symptoms such as her coughing up blood. Her hubby to be “S” accompanies her in an effort to support her, although he himself is currently stuck in a rather stressful job and battling with his undertreated illness. I found them a new doctor on Mary Shomon’s Top Docs – she’s two and a half hours away, but she seems worth the drive and the hope is that “S” will finally see some progress with his Hashimoto’s now he’s getting better treatment.
“H” has put off marrying “S” due to financial worries: “We were not married yet due to my disability as I felt my medical expenses would drag him into financial ruin and was afraid that the ensuing stress would kill him.” Although she herself often feels hopeless and sad, “H” makes an effort to support her hubby and get him to open up about his illness. It complicates matters further that strong-minded “S” tries to deny he suffers for fear of admitting weakness, whilst “H” tries to hide her pain and frustration from her family in a bid to protect them.
Like so many of us, “S” was ridiculed by his family, specifically his mother, who glanced at his bloated stomach whenever they came to stay and asked “When’s the baby due?” “S” would punish himself by not eating and spending his time on the computer to avoid his family’s mockery. “H” finds it particularly hard to watch “S” suffer and know she doesn’t have the power to help him, but they certainly have their own unique form of communication: “We have a code for how we are feeling when in public: we say ‘OK’ for doing as well as possible and ‘F.I.N.E.’ for Fucked up, Insecure, Neurotic and Emotional. It is our little joke so that we don’t have to say ‘I feel like crap.’” I find this story inspiring, knowing that it is possible for two severely ill people to support each other against all odds.
I believe that we can learn something from all of these stories. On the one hand, they make us realize that we are not alone. Many people have experienced similar things. On the other hand, they inspire us to never give up and they give us ideas as to how we ourselves can deal with our relationships with our own friends and family.
Until next week,
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35 Responses to “Flying With Broken Wings: How Chronic Illness Affects Our Relationships ”
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Really great article! I now know why I have suffered with planter fasciitas for a couple of years prior to being diagnosed. I wish I knew all the other ailments that can be associated with this diease.
Sarah – I absolutely loved this article. Thank you for sharing your own personal story and struggles with your thyroid.
Thank you for the blanket statement, something I (Katie) struggle with constantly.
I was so proud of all of the patients who courageously came forward for your article.
Well done, love it!
Katie
Michelle – Katie here… Real quick, which thyroid disease do you have, if you don’t mind me asking? I’m thinking/speculating, Hashimoto’s yes?
Michelle and Katie: So glad you two liked it! The lady with plantar fasciitis is actually one of my relatives, so has been keeping me updated on her story and we’ve also come up with some good tips, which I am planning on incorporating in another article. Originally L had a cortisone shot, which made it so much worse and right now she is seeing a chiropractor, which provides her with some relief at least, but it seems an ongoing struggle. There are lots of other tips I have seen, particularly on http://www.thyroid.about.com, but I will have to list them all in a later article.
I thought this was such a great article – and it would be so helpful to all those who on thyroid forums who ask “how do I deal with family and friends who don’t understand?”. This blog really outlined some tips to do that.
I really liked the visual the phrase “battered and bruised on the inside”…and plan to use that one in the future myself. Thx for such a great read on this subject!
Thank you, Cindi, I’d be ecstatic if my article helps others to explain their disease. People need to understand what is going on with us and raising awareness helps others get diagnosed. I also loved L’s phrase “battered and bruised” – I got some excellent quotes thanks to these four thyroid patients spilling the beans. The article wouldn’t have been half as good without them and I am also proud of each one of them for being so brave to open up to me.
Thank you for this Sarah, I have Hashimotos as well and at the age of 23 I often find it hard to get out of bed which others just look at as me being lazy. I hope your sister in law can find some type of treatment I am still in search of proper treatment for mine as well. I have been diagnosed but was told to wait a couple months until I really go into hypo. I just about cried several times at doctor’s appointments it’s hard to keep being told you are okay when you know that you are not! Looking at me no one can tell whats going on but just getting dressed and appearing to be okay takes so much energy. Once again thank you for sharing your story Sarah!
Jennifer, thanks for responding. I am so sorry to hear what you are going through. I hate the way so many doctors just base treatment on the numbers rather than on how we are actually feeling. Have you thought about switching doctors – Mary Shomon’s top docs sites lists quite a few (http://thyroid.about.com/cs/doctors/a/topdocs.htm). Where are you based? This is how we found my brother- and sister-in-law’s new doc. I talk to my sister-in-law everyday and we are very close – we help bolster each other up because we are both quite sick right now. I think my sister-in-law will get the treatment she needs. She’ll be on her hubby’s insurance soon, which is a lot better than hers (she has Medicaid due to her disability, so it severely limits which doctors she can see, particularly in the state of MS). We are also considering getting my doctor to treat her – he has already offered. She’d just have to come and visit us for a while. She has so many complications that it’s hard for just one doctor to treat them, but my doc works closely with several specialists, so this might be the solution.
Sarah, I loved your article which i found to be very informative and very well written. I noticed foot pain when i started taking thyroid meds and now five years later i have full blown Planters Fasciitis which is extremely painful. I wonder if there is anyone else out there who noticed foot pain when they started their thyroid meds and if so have they found successful treatment and relief for the Planters Fasciitis?
Beautifly written and and enjoyable read! It is great to hear everyones story’s, keeps me from feeling so alone in my struggles.
I look forward to all your future articles!
consider me one of your greatest fans, im sure you have meany!
Michelle, have you found successful treatment for your Planters Fasciitis?
Laura, thank you for your kind comments. I’d love it if you could share more about the treatment of your plantar fasciitis as you find out more. Any tips you might have would be much appreciated. Hope it gets better soon!
Heide, so glad you liked my article and that it makes you feel less alone. I’d be very happy to have you as a fan and hope that you keep reading:-).
Sarah, loved your article:) It was good to hear so many out there with like minded symptoms like myself. I can relate to everyone. Ironically, I did not realise that Planters Fasciitis might well be connected with the Thyroid disease. I do have foot problems, but I am not aware of having that, as far as I know. But, my friend (who also is Hypo) has suffered from it for many years. Will have to tell her to read this. My friend and I suffer from Candida occasionally as well, so its interested to know that too.
Even after having the Thyroid condition for more than half my life, I have discovered more since interacting with this web site over the past couple of months than in all the years since I was diagnosed. Its so good to know that I am not alone and there are so many who feel similar to the way I do on a day to day basis.
The Thyroid gland has a lot to answer for, don’t you all agree??!!
What a great article Sarah.I love your honesty.Thanks for sharing your story.
My bf of over 7 years broke up with me while I was still trying to find out what was wrong with
me. When I knew I had Hashimotos I kept trying to explain to friends and family
what that meant.Some showed a little interest,most just said I was using this as
an excuse.It was a really hard time back then.
Now I am thankful for my disease. It made me realize that I have to put myself
first.I kicked every unsupportive person out of my life and I’m finally becomin
the person I was supposed to be in the first place.
Sarah I too loved your article and I thank everyone that contributing to it. There are many good helpful suggestions I know I will be using.
I suffered almost exactly the disabilities as ‘H’ and I have so much hope that she will find great improvement in all of them with proper thyroid treatment alone, as I have come to experience they are all related.
I had plantar fasciitis for a long time before I was diagnosed. I understand that it’s due to thyroid disease but I still don’t understand the cause. It took me almost one year to get it under control with constant (several times a day) tortuous stretching and icing. I also used a TENS unit (transcutaneous electrical nerve stimulation) for the pain. I used it for other painful areas from fibromyalgia and nerve pain as well.
Thank you so much for spending time to do these articles, Sarah.
Thyhugs,
Lori
Sarah, very informative article.
I love the F.I.N.E. for Fucked up, Insecure, Neurotic and Emotional. This gives new meaning to the overused phrase, “How are you?” and being able to answer fine, knowing what FINE really means 🙂
☮ ♥
Miriam, thank you for sharing your story. It seems so many thyroid peeps have plantar fasciitis and, from what I gather, it can be very painful. Candida sucks too – very uncomfortable indeed! I too am glad that Dear Thyroid exists. I was surfing Mary Shomon’s website for months until I found it and I was so glad to find a support network where people are so understanding, knowledgeable and eager to learn new things. The thyroid does have a lot to answer for, but the more we know about it the more we can hopefully get it under control.
Thank you, Christina. I was happy to share my story. I was sad to hear about your boyfriend breaking up with you because he couldn’t “deal” with you having this disease. I guess that shows that he wasn’t Mr Right. A good relationship is based on mutual support. There’s no excuse for insensitive people saying we use disease as a crutch. Of course, if they aren’t sick themselves, many people find it hard to show an ounce of empathy. I am so happy that you have turned your disease into something positive. Falling sick enables us to reevaluate our lives and our priorities. I know the same has been true for me.
Lori: I’m very happy if my article has provided you with useful suggestions. I will keep you posted on H’s health update – she has been ill for a long time, but we are determined that we will make some progress soon. I’m happy to spend the time on these articles. They’re actually a lot of fun to write and I always learn something about myself and others when I write them.
Monica: I’m happy if my article provided you with some useful information. I also like the F.I.N.E quote – H and S have a very inspiring relationship and will in fact be getting married on Monday, so H gets to be on S’s health insurance and things should be hopefully looking up from then. Her current doctor is a regular wanker to put it kindly and I get so angry every time she tells me about her latest appointment. He refuses to do any meaningful blood tests, although she has told him several times that she believes she is suffering from thyroid disease. Hopefully, the next doctor will be able to put 2 and 2 together when he sees the correlation of symptoms.
I can totally relate to thyrella “L” and her comment:
“It’s hard for my daughter to understand what is really going on with me because visually she cannot see my pain. This is exactly how i feel. I definitely need to send some friends this article including my family.
I love the F.I.N.E. quote as wel.. may have to borrow that!
Sarah, awesome article once again!
Loved it!
Cynthia, thanks so much for your comments. L did have some good comments, didn’t she? Very helpful to us all! I also like the F.I.N.E quote. Glad you like my article:-):
Hi Sarah
My friend introduced me to this site, as I too suffer with an underactive thyroid problem. I found your article very interesting. What I thought might be of interest to others in the group is that I suffered with plantar fascitis for three years. The pain was terrible. I never knew it had any connection with my thyroid problem.
After three years of suffering, and on the recommendation of a relative I demanded a blood test from the doctor to see if I was diabetic. Thankfully I am not. However, they also tested for uric acid levels in my blood and it turned out the levels were very high. The doctor subscribed Allopurinol (one you take it you are on it for life). After about 9 months on this drug my plantar fascitis was gone and, touch wood, I have been ok for about three years. My feet are still swollen and I can’t wear pretty shoes any more, but at least I am no longer in pain. Hope this might help some fellow sufferers.
Another Great Article Sarah. Best keeping things as simpla as possible when trying to explain to family and friends just what the disease is and how it effects us.
If they are interested in knowing more there are some great letter written by thyroid patients for just this reason.
Lolly
Doreen, thanks so much for sharing your experience with plantar fasciitis. I think that high uric acid is also quite common in thyroid patients. This can eventually lead to gout. My fiancé had high uric acid and the doctor put him on Allo Comp by Ratiopharm (one of the active ingredients is allopurinol), his high levels went down quite fast and so far they’ve remained at a healthy level.
Thanks Lolly. I agree that it’s best to keep explanations with friends and family simple (my explanation can be tailored to each patient’s needs, but I wanted to include the basics) because some people tend to switch off and become unresponsive if you give them a too complicated explanation. It’s easy to figure out if they want to find out more and you are so right – if they do, we can also direct them to this site, which tells the whole truth and nothing but the truth.
Glad you liked the article again. Looking forward to writing next week’s.
Sarah,
Thank you writing this article. It is so difficult to keep a relationship going with this disease. Communicating relational matters is often hard enough without a “weird” illness to complicate matters big time.
And I too love the F.I.N.E. definition! Inspired!
HDinOregon
HD inOregon, it was a very interesting experience writing this article, so I was more than happy to do so. I hope it helped you somewhat. You make some very good points about relatiobnships.
Social comments and analytics for this post…
This post was mentioned on Twitter by katieschwartz: Kick ass new installation of “Flying with Broken Wings” How chronic illness affects relationships http://bit.ly/c1HtoR please pass it along…
I have been to your posts before. The more I visit, the more I keep coming back!
Hey Susan, so glad you like my posts! I hope they are helpful to you. My column comes out every week on Sundays around noon PST. Tomorrow’s column is on the history of the stigma of illness.
Thanks so much for this article Sarah! I wish I had had this 12 years ago when I was finally diagnosed with hypothyroidism and Hashi’s; it will come in handy now that I am dealing with the aftermath of papillary thyca–captures a lot of what I’m feeling most days. And every time I answer “Fine”, I will be laughing inside. Thanks again, and hang in there yourself…
Hi Christine,
I’m very sorry to hear about your papillary thyroid cancer, but am glad my article was able to help you. Take care of yourself and good luck for the future! If you ever want to read more of my articles, I now write my own blog called Butterflies & Phoenixes (www.sarahjdowning.com).
All the very best,
Sarah
Christine – Sorry you’re dealing with the aftermath of Papillary thyroid cancer. For additional support, please check out these thyroid cancer columns:
“Life Redefined” (Joanna Isbill) http://dearthyroid.org/?s=life+redefined
“Life Through Lipstick Lenses” (Anna Warner) http://dearthyroid.org/?s=life+through+lipstick+lenses
Please feel free to connect with other survivors on Facebook, http://facebook.com/dearthyroid.
Wishing you the best.
Dear Thyroid