The Difficult Journey Toward Acceptance of My Chronic Illness


For 10 years, nearly every day has been a battle – a battle to survive the day and whatever onslaught of symptoms that day chooses to bring, whether it be debilitating head pain, swelling of my feet, hands and abdomen or confusion and brain fog so intense I can’t recall simple words or form a simple sentence. Some days it’s awful tremors that not only scare me, but frighten those around me. Other days it’s rashes, joint pain, heat intolerance, nausea, dizziness, forgetfulness, migraines, visual disturbances, shortness of breath and sensitivity to light. The one constant I face every day when I wake up is acknowledging the unknown of what physical challenges the day will bring me that will test me and push me to keep going whether I want to or not. As someone who likes to be in control, having no control over how my body will behave that day is a tough pill to swallow.

 

It took nine years, many doctors, countless procedures, hundreds of tests and several surgeries to receive my diagnosis that finally explained all of my random symptoms. That diagnosis was SLE, systemic lupus erythematosus. Of course there were many diagnoses along the way: allergies, ovarian cysts, endometriosis, PVCs, SVT, four different types of migraines, unexplained infertility, thyroid disease, insulin resistance, chronic eye infections and more.

But when my rheumatologist took me by the hand and said, “You have lupus,” I swear, for the first time in nine years, I felt like I finally had an answer, an answer to all of the questions that had boggled my mind for years. I felt relief. I felt almost euphoric. I felt like I would now be able to move on, be healed and get my life back.

It has been 15 months since I was diagnosed with lupus, and these last 15 months have been some of the hardest months of my life. For all the countless days, months and years I sought answers, I finally had one, but not the one I wanted. I wanted an answer that would have a simple solution, equation or treatment plan that would give me my life back – the life I had before I fell ill. Little did I know the day I was diagnosed would be the opening of Pandora’s box, because there are no simple answers for treating lupus and autoimmune disease. There is no magic cure. It is a lifelong chronic illness, defined as having periods of flare-ups and periods of remission.

It has been amazing looking back at the last 10 years and connecting all the dots. This has allowed me to see that all the random symptoms I faced over the last decade were not, in fact, random. Those dots have all come together to form one devastating picture, a diagnosis of lupus.

I so innocently and naïvely thought that knowing what was causing all my random pain and symptoms would be the end of the road of my struggling. That a clear path to healing would lie ahead and a simple prescription along with lifestyle changes would have me feeling better in no time. Sigh, if only we lived in a simple world with simple answers and simple solutions.

Having lupus and learning to live with it, as well as finding my new norm, is still a work in progress. There are many adaptations I’ve had to make along the way, many of which have been met with great resistance and tears of anger and frustration, and that stubborn spirit that has indeed allowed me to survive this nightmare of a disease. I’ve been super blessed to have the love and support of my husband and son who have been my biggest supporters and cheerleaders and who are the ones I fight this disease for every day.

I will say that on rare days I almost feel normal and those are the days I embrace and rejoice in and try to do the things I can’t do most days. Those are the days I think, “Maybe I am healed and a miracle has occurred!” or “Maybe I’m in remission!” The wretched thing about chronic illness is that those good days, the ones you live for, make you feel almost super-human and you tend to do more than your body can actually handle. So the next day you wake up at square one, feeling like death, and realizing your illness may have given you a brief reprieve, but it is very much still with you, and that’s not something you can control. The good days, the normal days – those are what keep me going. Those days remind me there’s still hope that I can and may well reach remission one day.

Acceptance, like illness, is a journey. I’m on that journey, but I’m not sure where or if it will end. I hope I do find acceptance, because I believe acceptance can bring about healing, and I would very much like to be healed. In the meantime, I will keep fighting. I will keep putting one foot in front of the other. I will rest on the bad days, and rejoice in the rare good days. And I will fight to win and not let the disease beat me. Maybe that’s what acceptance is after all.

This post originally appeared on uweremade4more.

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Thinkstock photo via Alter_photo.


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