A Patient’s Perspective: What I’ve Learned
The challenge of living with chronic illness is one that is not apparent to the outside world. Being sick is like being on a roller coaster — one minute you are feeling well and in good spirits, and the next, you feel sick and doubtful. It is an exhausting experience, but it is also a learning experience.
Further, no one knows what living with chronic illness is like better than you and no one knows the challenges better than you do. Your journey is an experience of adjusting and accepting. It is also one that involves embracing new challenges and learning from those experiences. You have to be informed and educated about your illness in order to better manage your disease and there is a lot of uncertainty involved. You just have to learn to take life as it comes, reflect upon what you have gained as a result of your experiences, use those experiences to your advantage and learn to separate grief from joy.
It has been more than four years since my diagnoses of rheumatoid arthritis (RA) and fibromyalgia (FM). People still wonder how I function and live my life despite being in pain and feeling sick all the time. They do not know what a day in my life is like. They just know I live with two diseases that wreak havoc on all aspects of life.
If anything, time has taught me that living with RA and fibromyalgia, although hard to believe, is just a part of who I am.
Accepting and Adjusting
The first year of my life with chronic illness was about finding acceptance and adjusting to a new life with illness and pain. That first year was the hardest year of my life but I learned a lot about myself including my capabilities, my strengths and my weaknesses. I was forced to change my career plans and to change the person I was and the priorities I had. I also learned I could still be successful, but had to change my perceptions on what success meant. Once I was able to accept that I was more than just a person living with chronic illness and pain, I was able to determine my fate.
But before that came a lot of soul searching. That experience involved a lot of anger and sadness. I gained a lot of weight that first year because I was inactive due to pain and because I drowned my sorrows in food. My anger alienated me from the people I loved and my sadness pulled me further into depression.
I eventually did find acceptance, but it took admitting by the end of that first year, that I was powerless to change the circumstance of being chronically ill and that I could not will my life back to what it was prior. That was a hard blow to my self-esteem, because I felt like if I denied I was sick or if I adjusted to my new life that I was somewhat changing who I was and losing my future.
What this experience has taught me is that while I am powerless to being chronically ill, I don’t have to give up on being happy. Admitting and accepting my diseases aren’t going anywhere means I can find better ways to make my life with chronic illness easier and better. Once I understood that, I was able to better determine how I would learn from my experience and how I could allow my life to change in positive ways.
Embracing My New Life
My second year living with rheumatoid arthritis and fibromyalgia was a year of growth. I knew who I was and I knew my life was forever changed. What I did not know was that I still I could reach for the stars, and I did. I became an advocate for arthritis and fibromyalgia, and worked on a master’s degree in legal studies.
Law school was no longer a part of my career path, because I knew I could no longer be a full-time, working mother attending law school while also being sick. I also started looking at a new job because I knew there was no way I could continue living with RA and fibromyalgia and working a very stressful job.
Further, I realized that in order for me to manage my diseases, I had to be more realistic about my expectations. I discovered I was the best advocate for my health by educating myself on how to better live with chronic illness and what the best treatments out there are.
I was still in pain, and year two was just as hard as year one as I learned to accommodate chronic pain and illness in my life. But the difference was that I was willing to learn about and embrace my new life. I was finding out who I was really was and I saw a different side of me — a side of me that sometimes made me angry and other times made me proud.
Looking back, I know that growth meant I could find better ways to cope and good coping allowed for my life to be easier. Granted, changes happen all the time and I am forced back to the beginning again, but the difference is I am better equipped to deal with those challenges. I just know that without these lessons, I would not be the person I am today.
Year three living with rheumatoid arthritis and fibromyalgia was the year my brother was diagnosed with cancer and also the year we lost him. That year was one of emotional and spiritual growth for me as I mourned the loss of my brother.
Year three also taught me how weak I was, something I didn’t realize until I watched my brother fight the hardest battle of his life and I felt powerless to stop his suffering. In the end, cancer won and weakness overcame me. The good that came from that experience was that I learned that it was okay to seek help and that no one expected me to strong all the time. I leaned on my family and friends for support and I allowed myself to truly grieve my loss. And I grieved in a way I did not allow myself to when I was diagnosed with RA and FM.
That third year was a big year of personal growth for me. I continued to mourn my brother and, with time, that loss was easier to bear. I also learned there were times a person had to walk away from things that were out of their control. I learned how important it was to appreciate loved ones. I also realized I had to love myself first in order to set my sights high for the things I wanted or to truly feel happy and less empty inside. More importantly, I learned to hold my head high and not let anyone dictate my happiness.
I moved that year, finished my master’s degree, got a new job, and I worked on my personal life and making my faith stronger — all while grieving the death of my brother. The obstacles that came my way were easier to bear because of my prior experiences living with chronic illness. While year three was a sad year for me, it allowed me to come into year four knowing that life is full of things that are unexpected and if we are strong, we can allow chronic illness and pain to teach us how to be flexible and see the good even when there is bad.
I came into my fourth year with rheumatoid arthritis and fibromyalgia forever changed and with different perspectives on love, life, success and happiness. I took a stronger approach to healing and management of my diseases. I changed my diet, lost weight, become more active and made further changes to my lifestyle. I also focused on my faith and on my career.
Coming in year four, I was more prepared for the obstacles that life threw my way. While I struggled with infection after infection this past summer, I found myself feeling better overall with the diet changes I had made. I understood that setbacks were merely setbacks and that even after those, I could continue the course. I can succeed because I know chronic illness is a part of who I am and, just like my will and determination, my diseases were here to stay.
Reflecting on that fourth year, I am more convinced than ever that, even with chronic illness, life can still be good and joyful. I am reminded of a quote by John Newtown: “I am not what I ought to be, I am not what I want to be, I am not what I hope to be in another world; but still I am not what I once used to be, and by the grace of God I am what I am.”
I can only be who I am now even if that means that being chronically ill is a part of that. Knowing that has helped me to finally stop being hard on myself and to ask for help when I need it. After all, no one requires of me to be a super woman or to be someone who has to jump every time a friend or family member needs help.
These days, I have fewer friends than before I was diagnosed, but the friendships I have now are much more precious than those I had before. What has helped me the most in my journey that I have let go of bitterness, anger and guilt. I know that others don’t understand what life with chronic illness is like and I don’t have right to be angry or jealous as a result. I had also harbored a lot of guilt for a long time because I hated letting others down, but I learned that chronic illness does not leave room for judgment and it is my choice to live with guilt or without it.
I am Grateful
Going into year five, I have never been more humbled about life, people and the wonders of the world. I have met a lot of people along my journey and they, too, have taught me so much. I no longer mourn the person I was before chronic illness became my everyday reality. If anything, I know rheumatoid arthritis and fibromyalgia are part of my life now. They are part of this person I have become who is strong in conviction and who can weather the worst storms. I am better for the lessons and obstacles that have been thrown in my way.
For a long time, I dreamed that one day I would wake up and be symptom-free, but over four years later, I am not. I had wondered if my health would get worse and if I would ever learn to live with the chaos that RA and fibromyalgia brought into my life and I have gotten better at managing my diseases and I have learned to live with the chaos. Granted, remission is something that remains in the back of my mind and while I long for it, I have learned that it is likely out of my reach. I know that will be taking a whole of medication, watching my diet and trying to be active despite pain for the rest of my life.
I don’t want anyone to believe that living with two chronic illnesses is easy, or even that it gets easier. The only thing that gets easier is how you deal with a life like this one. The numbers of those that go into remission are small and most medications are only as successful as slowing down the disease. For me, that has given me time that I thought I didn’t have. I was told I would be disabled by now and I am lucky that I wake up every morning and move my stiff joints. By the time I leave the house every morning, the stiffness has lessened and my pain is tolerable. The truth is I do have good days but when the winter months are here and weather cools and dampens, my RA and fibromyalgia symptoms return in full force. Every fall, I know what the next four to six months will be like for me. I accept that and I move forward. After all, life won’t stop because I am not feeling well.
Whether I like it or not, rheumatoid arthritis and fibromyalgia are here to stay, and, more importantly, they are a part of who I am. While I wish I could change that, I am grateful for the person I have become. Because despite my struggles, I know that there is still more good in my life than bad.
Originally posted at Arthritis Connect