Why I Remain an Optimist Despite My Chronic Illness
I am, and always have been, an eternal optimist. But dealing with chronic debilitating health problems can really shake your resolve to stay positive. I have struggled a lot lately to keep my sense of optimism. There is honestly nothing that can make you feel more hopeless than having a doctor tell you they don’t know why you are hurting and they really can’t help you.
Today I had yet another doctor appointment in an attempt to find the cause (and if I’m lucky, the cure) for a very intensely painful flare-up I have been experiencing. I realize I may have to accept it as yet another part of living with fibromyalgia, but because some of these pain symptoms were new, I thought it was worth exploring.
I started by going to see my gynecologist, as I really think I have endometriosis. She did an ultrasound and found that I have polycystic ovary syndrome (PCOS). On to a specialist, who confirmed PCOS and put me on medicine to treat this.
That was two months ago, and I am now four months into the most painful flare-up I have ever experienced. I have been having cramps and stabbing pain in my pelvic area for four months straight, along with hip pain, thigh cramps and lower back pain.
I want to just “push through” the pain, but this pain (unlike my normal fibromyalgia pain) tends to worsen with exercise, and I have been pretty well trapped on my couch for the past four months with no sign of improvement. I got to a breaking point on Sunday after I attempted to attend church. I was feeling so isolated from my friends and thought I would try sitting through a service. But unfortunately sitting has become it’s own special torture, and I was in tears by the end of the hour-long service.
This is my life now, trapped in my own body. I keep remembering I am only 29. I keep running over the possible diagnosis and treatments and realizing I will likely be struggling with these issues for many years to come. PCOS, I’m already being treated for, and this will likely continue until menopause as it is hormone-related. Even a hysterectomy is unlikely to help with PCOS, as taking out all of the organs causes a higher health risks. Most doctors now tend to take out only the uterus with a hysterectomy (that procedure has much lower risks, but would not help with PCOS).
I had also been researching treatment options for endometriosis in case I have that. There is ablation (which my doctor did not recommend as it can cause other problems and doesn’t tend to help endometriosis; plus, as I do not have any signs of endometriosis in my uterus, I don’t think that treatment option really even applies to me). There is laparoscopic surgery to diagnose and remove adhesions if endometriosis is found. My doctor really did not recommend this for me either. She said based on the pain I was experiencing, I might not even have endometriosis. And if I do have it, she said the surgery would at best be a very temporary help. She said the adhesions will likely come back, and the pain of recovering from surgery really outweighed the possible benefits for me (especially as I have a history of not recovering well from surgery.)
The only option left is a shot called Lupron which mimics the effects of menopause on your body, but it can only be used as a temporary fix because going through menopause early can cause a whole slew of other health risks. Doing a hysterectomy is not recommended, because endometriosis is caused by hormones, and taking out the uterus can actually cause the adhesions to have more space to grow and allows the condition to worsen. Basically, neither diagnosis has much likelihood of improving until menopause, a good 20 or so more years for me.
Nothing will make you feel hopeless and defeated faster than a doctor telling you they can’t help you. That you are already taking the best (and only) treatment they can offer you. That there is nothing else they can do.
You see, I am an optimist. But how do you hold out hope when there is no hope? When there is no cure and no treatment to help you? I found myself sitting in the doctor’s office repeating over and over in my head, “You can’t help me.” But it is still so hard to accept, so hard to understand. So many of my friends and family members have told me they “just want me to feel better.” But over and over again I have had to admit I can’t be cured. Again and again, I have come across a new possible diagnosis, I have run the multitude of tests, only to be told that what I have is chronic and permanent. There is nothing that will make you feel defeated faster than knowing you are absolutely out of options.
So how can I reconcile being an optimist with accepting that my condition is chronic? I have learned it is absolutely OK to admit I am sick and can’t be cured. It’s often hard for people to accept this is the case, especially because I am so young. But honestly, accepting my reality is not the same as admitting defeat. When I say I am sick, it doesn’t mean I am a pessimist or giving up!
I will keep being an optimist by choosing to see the rainbow in every storm. I choose to look for the silver lining. It’s not always easy. But I think about the small things. For instance, I’m able to stay home because my husband has a job that pays well enough for him to support us both. I know many people who have had to keep working despite their health problems, and I am able not to work. And I am grateful for that!
I have an amazing dog who is always ready to snuggle up with me on my bad days. I have the comfiest couch known to man. Our air conditioner broke down and we were able to replace it. I have amazing family and friends and the most understanding and supportive husband, each person in my life helping me deal with this illness in the best way they know how.
I have many, many things I can be thankful for even on the worst of days. Some people will say, “If you don’t have your health, you don’t have anything.” But I challenge that statement. I say that as long as you are alive, you can find something to be grateful for no matter how small it seems.
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Thinkstock photo via DeepGreen.