This post is perhaps much more personal than the rest of mine so far, as it is about my personal journey with chronic illness and towards recovery. I was inspired to write this on a whim and from the heart, as I sit at home overcome with many emotions, as well as debilitating symptoms including cognitive and neurological issues, so forgive me if this post seems like a “first draft”.
My experience with chronic illness and my personal journey towards wellness has been and continues to be a road filled with many twists and turns and often times, a road that feels neverending. In a matter of four years (although I have been ill for many more), I have seen myself go from working a full time job and pursuing graduate studies to being on disability and totally bedridden and almost paralyzed at one point. Even while being on disability, I have been working to start a non profit organization for the chronically ill, assisting those with chronic illness with locating health resources, and leading a social group in my local area.
I guess I can say I am a total “type A” personality, which I often wondered was a major factor in my getting sick in the first place. Ironically, this personality and my refusal to fall into a “sick role” was also one of the greatest factors in my managing my illness and has helped me transcend times in which I could have easily given up. About six months ago, I suffered a serious spinal cord injury as a result of my chronic inflammatory disease. I was “lucky” enough to have gotten surgery a few days before I would have become totally paralyzed,and I use the word lucky in the literal sense. The month prior to winding up in the hospital and needing urgent surgery, I had eleven visits to the emergency room, a visit I do not make unless I am in agony. Despite my crippling pain and desperate efforts to let doctors know there was something serious going on, unlike anything I ever experienced before, the doctors continued to tell me the pain was just a flare of my chronic medical problem.
My final ER visit, which was precipitated by my inability to urinate, walk, feel sensation in my body, and the most excrutiating burning pain of my life significantly alarmed the doctors and finally prompted them to admit me for testing. The testing showed I had three discs in my cervical spine herniated so badly, they were flattening my spinal cord like a pancake. I was told by the neurosurgeon that I might never walk again and at best, the surgery may prevent the progression of symptoms. Despite the horrific news and my extreme anger towards the doctors that previously diagnosed me incorrectly, something caused me to hang on and keep going.
After my surgery, I had a recovery frought with uncertainty about regaining sensation and being able to urinate on my own or even walk, extreme pain, and wearing a neck brace for months while the glands in my neck swelled up from my chronic illness, making it difficult at times to breathe. I spent time in rehab trying to regain strength in my legs and arms, barely being able to lift myself up at time. There were times I wanted to give up and put a permanent end to my pain, yet something in me kept going. Something in me told me I had a reason for being here, which was to help others with chronic illness and help to ensure they wouldn’t suffer needlessly, as I had. Luckily, I did make a full recovery from that injury and am walking again just as well, if not better than I had before.
After suffering the spinal cord injury, which I knew in my mind was caused by my chronic inflammatory condition, I knew I could no longer do what I had been doing for so many years, which was accepting being ill and the fact that no doctors were able to help me get well due to the complex nature of my illness. Although I had always maintained a positive attitude about living with chronic illness, I never thought about the possibility that things could be different. I just considered myself learning to cope with a hopeless situation with a positive hopeful attitude. My spinal cord injury, while traumatic, helped me realize that I could no longer sit and watch my illness progress even further until it eventually killed me. My anger towards the drs that allowed me to become paralyzed and towards the doctors I had seen over the years who painted a bleak picture of my prognosis could have easily took away the last bit of hope I had left. Instead, it actually served as a vehicle for me to finally decide NOT to accept my situation as being hopeless and to decide to do whatever it took to get me well. In my case, this meant seeking out a holistic medical dr and making drastic changes in my lifestyle.
For years, as my health worsened to the point of total disability, I had been resistant to trying alternative health care because of fear instilled in me by conventional drs and extreme guilt over having to borrow money to pay for them. Ironically, the traditional treatments that I was told by drs were “safe” were slowly killing me. I knew conventional medicine was not working for me. I knew my current diet, although healthy, was not working for me. I knew I had unresolved emotional issues preventing me from healing. I knew my current primary care doctor was not helping me. Yet, I refused to do something about it because I had deeply internalized the idea that my illness was untreatable and there was no doctor that could help. Well, I think it took my almost becoming permanently paralyzed to finally wake up and make a conscious decision that I WAS going to make any change in my life necessary to get well and was going to seek out the type of doctor I knew I needed, even if I had to borrow money from my family, which they offered in the past.
The decision to get well lead me to doing research on the best doctors and the best treatments for my illness. After a lengthy search, I finally found the doctor who I had been seeking for over ten years and he was only two hours from my house! Lucky for me, I was able to get an appointment with him fairly easily and as soon as I met him and he started talking with me, I KNEW he was the doctor I was looking for. He was the first doctor ever to ask in detail about my emotional state, to discuss nutrition in detail, as well as addressing the fact that I was chronically ill as a child. His approach is to treat me as a person and look at all contributing factors to my ill health: emotional, social, environmental, physiological, etc. He was the first doctor ever to hold my hand as I cried in his office about how ill I have become and how other doctors I had were not listening to me as I was slowly becoming paralyzed.
I am a firm believer that things happen for a reason and people come into our lives for a reason. Well, there is a reason I found this doctor. After nearly giving up hope of ever finding anyone or anything to help me and accepting learning to live with my illness and “cope”, I finally found a doctor who I strongly believe will help get me well. I have been in treatment with him for a little over a month now and have been dealing with both improvements and temporary setbacks in my health (with my illness, one often gets worse before they get better). Despite the setbacks, I am hanging onto three things that keep me going: hope, inner strength, and perserverance. Even in my darkest times when I am dealing with severe worsening of my symptoms and wonder how I will survive another day with crippling pain, fatigue and other debilitating symptoms, I push on. Giving up would not only mean giving up on myself but giving up on those I have helped with chronic illness who have relied on my positive attitude and hopeful spirit. I know one cannot have a positive attitude all the time. I certainly can’t given the struggles I continue to face. However, I do believe that even through the darkest of times, there is hope and a strength within ourselves we didn’t even know existed that forces us to keep on going. It is this hope, strength and perserverance that is what we MUST hold onto when faced with a chronic illness or other life altering situation.
chronicillnessfrontiers
[...] What Keeps Us Going with Chronic Illness [...]