Flying With Broken Wings: In Sickness and in Health I said I don’t
It seems most people I know, myself included, don’t enjoy being alone, so the natural instinct is to find a partner and how do you do this? You play the dating game. When you’re dating, self-esteem is particularly important, but when you are suffering from a chronic illness, this can really throw a spanner in the works.
I never found the dating game an easy one to play, so much so that in October 2007 I decided to pack my bags and go back home to England. I didn’t want to be alone any longer, but I was sick and tired of trying to look for Mr. Right here in Germany when it felt as if I was recurrently bumping into Mr. Wrong. As is so often the case when we are not looking, that is precisely the time that I bumped into my Mr. Right – two weeks before the ferry would have taken me back home. My dad had already come over to take a whole carload of stuff back and my mum was looking forward to my return – in fact, she cried when I told her that I wouldn’t be returning because I had met Corey and I was moving in with him after knowing him for just one week.
You may think I am crazy and stupid for this decision. However, if my previous dating experiences had taught me anything, that was that you have to jump at your chance when it feels right and follow your instincts. Otherwise, you might live to regret it. I moved into his place while he was still in the US – I figured if he trusted me enough to let me do this, then I could trust him too. As it was, I no longer had a place to live anyway as I had already given notice on my flat. Not for one second have I regretted my decision. Today, we live in Düsseldorf and we are both battling away to overcome Hashimoto’s (autoimmune underactive thyroid). I am lucky to have a supportive, kind and sensitive fiancé and I am telling you this story in the hope that you will believe that you too can find your Mr. Right (that is if you haven’t already). Sometimes love comes when we least expect it.
I wasn’t always this lucky however. Perhaps we have to go through a spate of bad experiences in order to truly realize what we are looking for. My first boyfriend – and the one I moved to Germany for – was M. He seemed so sweet at first, but as time went on he continually picked my appearance and my intelligence to pieces. At the time, I wasn’t yet diagnosed with Hashimoto’s, but one of the most painful things he did was to nag me about my weight. I remember one particular incident when he forced me – at 63 kg (138.6 pounds) – to put my money in a set of scales at a pharmacy only for it to tell me that I was overweight. One time on a train, he even claimed that a drunken guy had laughed at me and commented on my weight, too. In hindsight, I was always struggling to match my BMI, but I never managed and now I know that I am probably not supposed to – according to BMI, I will always be overweight, but I know my body better than some silly table. At the time, I was a Size 6 – 8, but M was simply obsessed with me being skinny. From my early to mid 20s, I started filling out and it seemed there was nothing I could do and no way that I could satisfy M. Silly me for even wanting to, but at the time I was naïve and so scared of losing him. In hindsight, I now know that this was most probably my Hashimoto’s having its wicked way with my weight. Once I heard a guy on German radio talking about his ideal girl – one of his specifications was that she wasn’t allowed to weigh more than a certain amount of kilos – it was something like 65 kg (143 pounds), I believe. I weighed more than that at the time and wasn’t exactly huge, but comments like that make me realize how unrealistic and unfair the opposite sex often are in terms of their expectations (and that includes both men and women). M certainly wasn’t an Adonis, but it felt like he expected me to be Cindy Crawford! One time he noticed that I had a hair on my chin – as I said, I am hormonally challenged and, yes, I do get the odd hair, but I don’t exactly have a full beard or anything that you could really call facial hair. The bastard pointed it out and called it a “witch’s hair”.
The other thing that M did was pressure me to have sex with him despite the fact that he knew it was excruciatingly painful for me. His tagline was to tell me that I am no longer a child. I always blamed myself, but a few months ago my new gynecologist removed a skin tag which he said was the cause of my painful sex. We sort of suspect that this skin tag may well have developed due to my hormone imbalances. I am without a doubt hormonally challenged and I probably was back then. It certainly didn’t make my sex life any easier!
Oh yes, M really did wonders for my self-esteem: my legs were too short, wearing red made me look like a tomato, I had always had bad skin, my hair was dark instead of his preferred color red, I was too hairy (ironically, it was thanks to that particular comment that I got diagnosed with PCOS – I was never super hairy anyway, but he was quite simply obsessed with any kind of body hair – he was extremely high-maintenance to say the least). It has taken me literally years to get over the mental damage that M inflicted on me – at one point, he even had the gall to call me slow.
Being with Corey has made me realize that I am none of these things M accused me of being and that I shouldn’t have to change myself for a guy. If he loves me, he loves me for who I am. Everybody deserves this kind of acceptance, but these days it seems that it is very hard to find. I sometimes wonder if dating was easier in days gone by.
After M, I got together with S. We were never right for each other, but the main problems I remember in terms of my health were the fact that he quite literally ate like a pig. He was very overweight and I suspect now that maybe something else was going on in terms of his metabolism, but he seemed to stuff his face with junk food 24-7. By this time, I had accepted the fact that I had to watch my weight, but I often ended up eating like he did, which really didn’t help matters. If you have a metabolic disorder, it’s important to get the support you need from your partner and for them to truly understand that you do need to eat healthily. That is hard when they are doing the exact opposite. My other issue with S was that he was constantly lethargic and never wanted to do anything much. When you have Hashimoto’s, there are times when you feel like you have to get out and get some fresh air. I have to literally peel myself off the couch at times and go out to get some exercise and energize myself. I felt like I was pissing my life away with S. The sad thing is that I now suspect that he too may have been hormonally challenged, but he has a phobia of doctors, so he may never know it. I now realize that I need to be with a partner who wants to experience new things and has the motivation to try new activities and visit new places.
All of these dating challenges are enough to make you want to capitulate and throw in the towel. That’s certainly the way B feels: “Oy, I gave up on dating. I figured if I can’t handle the gross and confusing things my body does, not sure how to expect anyone else to.” B’s boyfriend dumped her two weeks before her cervical cancer surgery as he “couldn’t deal with it.” Another boyfriend left her because he wanted to be with someone “fun”, so she “forced” him to cheat on her. Since then, B has been diagnosed with Hashimoto’s and PCOS and now realizes that her exes were bad candidates for the “whole sickness and in health bit.” As I said above, we need to find someone who appreciates us for who we are and accepts our flaws including health conditions. Not one of us deserves anything less and there have been times that I have chosen to be single rather than in a relationship because I don’t see why I should make do. On the flip side, it can get very lonely, but I also think we have to learn to live with and accept ourselves before we can expect anybody else to. Sometimes that is a tough road to walk, but we are never walking it alone.
K has adopted a similar attitude: “I want to date, but I’m terrified to date.” She goes on to say how Graves’ disease broke up one of her past relationships because she was thyroid psychotic at the time. Now she is afraid that she’ll never allow anyone to love her again as she is shit scared of intimacy and the weight gain that she has suffered hasn’t exactly boosted her self-esteem either: “I am terrified of a man seeing my lady parts ravaged by Graves’ disease. What most people don’t talk about, and what I came to learn after the fact, is that some patients get brown/black polka dots around the labia, inside the vagina and upper inner thighs. I feel like a monster. How do you explain to someone venturing to your down there to nosh that things don’t quite look the way they should? I don’t want to be rejected. I don’t want to be dishonest. I want intimacy and sex in my life, but I am terrified of the ‘what ifs’.” Like many of us, K has also been faced with lack of understanding from her boyfriends. She talks of how two exes recently contacted her to see how she was doing and, when she told them about her Graves’ disease (autoimmune overactive thyroid), both of them asked whether it was contagious. She was devastated and hurt by their lack of awareness.
H’s mother M suffered a string of health conditions that affected her relationships and ability to date. “Mom said by the time she had two false breasts, thin hair (so she wore a wig) and false teeth that she was mortified to date. She hadn’t dated in seven years before she passed and she was only 63. She used to joke she probably had cobwebs down there.” In high school, she had sworn never to marry because she didn’t expect anyone to put up with her health problems. Furthermore, due to her confidence issues, she tended to pick guys who weren’t very nice to her. M’s strategy was to tell potential partners about her health problems by the second date so that they “knew what they were letting themselves in for.” Following a double mastectomy, she had prosthesis, so it wasn’t immediately obvious that she had no breasts. Instead, her breasts had been replaced by scars that stretched around her chest and down to her navel. M felt her health was part of who she was and wanted long-term partners to accept this because they were interested in her as a person rather than as a sex object. She was very frank and would tell them “yes, I have a daughter and I have no breasts.” She had been horribly hurt in the past and guys had walked out on her because they were “grossed out” by her scars.
In the process of reconstructing M’s breasts, she went through 52 surgeries, all of which failed because she developed an allergy to the silicone implants which started pushing their way out through her chest wall. To complicate matters, one of the surgeries involved transplanting a skin graft from her inner thigh to her breast in order to create a nipple. The areola of this nipple started sprouting hairs that were the thickness of pubic hairs and would grow up to two inches, so M had to fastidiously pluck her nipples for fear of meeting with the disgust of her sexual partners. She always was very particular about her grooming, but being so sick with fibromyalgia, the breast cancer, obesity and what H and I now suspect to be thyroid disease, this became increasingly difficult.
M battled her whole life with her self-esteem – considered an outcast by her own mother, she believed that her sister was prettier than her. M felt like the odd one out in her family because none of the others struggled with their weight and they also looked different than her. She spent most of her days on the lake in Montana. The area where she lived was highly polluted, which may well have caused her later health problems and those of her daughter.
Luckily, M was also a very inspiring and positive woman who knew how to make the best of her health challenges. She bartended for 15 years in Alaska and her running gag was to pull out her prosthesis and throw it across the bar. “She turned something painful and horrific into something light and funny,” explains H. She goes on to tell me how if it weren’t for her allergies M would have loved to have concealed the scars on her breasts by elaborate tattoos. Apparently, legend has it that this was the traditional practice of women of the Amazon tribe who cut off their right breasts so that they could better shoot a bow and arrow.
M even won a lawsuit against Dow Corning, the manufacturer of her silicone breast implants that popped. Apparently such an “explosion” could even be caused by something as simple as a mammogram! She subsequently went on television to explain to people that saline is not a safe alternative to silicone. She wanted to get involved to prevent even more women from getting sick. The silicone floated into these women’s bodies and permanently changed their DNA cells. In M’s case, it had probably caused her to develop lupus.
Sadly, M’s own grandson and my 18-year-old nephew V suffers from similar problems. He is painfully skinny and thus endured nasty nicknames such as “98-pound weakling” and “toothpick” all the way through junior high. He didn’t pick girls he was interested in, but tended to pick girls who were interested in him – perhaps because of fear of rejection. Like his mother and grandmother, poor V was also diagnosed with fibromyalgia at age 10 (interestingly, he is one of the rare cases of men with this illness). Because of his health issues, we also wonder whether he too has a whacky thyroid. Luckily for V, however, he can really charm your socks off and is very intelligent, smart and sensitive.
T was diagnosed with Hashimoto’s 10 years ago. Her idiot doctor never treated it, preferring the “watch and wait” strategy. This resulted in her having a gastric bypass when her weight spiraled out of control and shoulder surgery to fix the damage caused by arthritis. She also has lupus. As a teen, T kept her weight down with drugs and would suppress her high by taking painkillers, which she was addicted to. Her ex-husband was one of her fellow drug users. His attitude to her health problems was less than sympathetic. He claimed that any disease she had “doesn’t count, isn’t a real disease and that she was a hypochondriac.” He told her to go to a therapist as he felt “it was all in her head.”
Despite the fact that her obesity severely bothered her, T’s hubby didn’t mind it. In fact, he rather liked it as it was sort of an insurance policy for ensuring that she didn’t attract any other men. That didn’t stop him, however, from cheating on her once she had her gastric bypass and had lost all the weight! T is now dating again, but finds it tough because of her low energy levels. She beats herself up because she considers herself a bad mother as it is very hard to deal with her children who are severely ill.
M’s daughter H had three surgeries in a row and spent three months in bed. After she had neck surgery, things got so much worse and her energy really was zapped. We now suspect that this may have exacerbated a preexisting thyroid condition – all her existing symptoms (fibromyalgia, celiac disease, weight fluctuations and many others) point to this. H had to give up college a month from finishing her degree as she was simply too sick to continue. H’s overprotective mother-in-law was always concerned that her son S was burdening himself with a sick partner and H always did (and still does) beat herself up about being ill. She wanted to fix her health issues and then get married to S, but that wasn’t to be: “When we are sick, we want to do more and be more, are trapped in our bodies because we’re not sick inside. We’re still the same people we are when we got sick. When your body is being difficult and rotting away and you don’t know why and how to fix it or are fighting, inside you are still the same person who wants to go camping, fishing and have fun, make love all night long to your partner. You’re still that person. No matter what your partner says – they can be supportive, loving and understanding; truth be known they would rather have the other person back too. Nobody wants their loved one to be sick, especially not if it changes their entire life. I’m not just affecting my life, but also his and my children’s. His choices are different because of me. We’re all disappointed in our bodies, not in ourselves, just in our bodies.”
To finish, I’d like to give you some good tips on how to bolster your self-esteem that were passed on to me courtesy of H’s therapist. Low self-esteem is a result of how we talk to ourselves in our heads, similar to a “broken record”. We have to “change the record” by reprogramming our brains. For instance, if you catch yourself telling yourself you are “a fat pig”, be aware of this and don’t allow the thought to be completed in your head. One way to do this is to turn your negative statement around and write a positive statement about yourself on a Post-it® note and stick it to your mirror or your computer monitor – somewhere where you frequently see it. Such Post-it® notes can also work well as notes of motivation, so if you are beating yourself up because you feel fat, this is unproductive – instead you might consider writing something such as “I’m beautiful the way I am and I am going to feel better about myself because I am an attractive person.” Negative thoughts will sabotage your aims because we tend to act on them. In contrast, positive messages of affirmation will encourage you to strive to reach your goals. Meditation works in a similar way by finding a positive mantra you can focus on by repeating it to yourself and instilling in yourself positive self-confidence.
Another thing that I’m sure you’ve heard before is that you have to learn to love yourself before you can expect others to love you. For me personally, this has a lot to do with self-acceptance. For years, I (and various others – my family included) have beaten myself up for being slightly overweight. It was a type of self-flagellation because I truly believed that it was my own fault and felt an inherent sense of guilt. However, on being diagnosed with Hashimoto’s and realizing that my reproductive hormones are still not balanced, I dropped this guilt, educated others who had taunted me in the past as to why I have weight fluctuations and began to accept the fact that I do have weight problems, but I am one of the lucky ones to get diagnosed because now I finally know what is wrong with me and have good doctors who are eager to give me the right treatment and help me lose the weight. If anyone ever attacks me again because of my weight, I will try to educate them as to why overweight does not always equate to laziness and greed.
My attitude to myself has changed in the last few years. My fiancé Corey is beautifully accepting of who I am to the point where I asked him if he’d like me to lose weight. His response was that he loves me the way I am and that he wants me to do whatever makes me happy. At the end of the day, few of us – even without thyroid disease – are supermodels and if a partner is worthy of our time, he or she will appreciate us for our inner values and not unrealistically demand that we give ourselves a complete overhaul. I wish each and every one of you happiness, luck and acceptance in your relationships and would be honored for you to share your experiences with me.
Lots of love,
Tags: chronic illness affecting relationships, dating with a disease, diseases and romance, Editor Dear Thyroid, fears about dating, Flying With Broken Wings, In Sickness and in Health I don't, relationship issues chronic conditions, Sarah Downing, self esteem issues