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)
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.”
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,