When Medical Setbacks Change the Face of Your Chronic Illness

The thing about living with chronic illnesses is they are never static. Every day symptoms wax and wane. Some days are better than others, but the symptoms are always present. However, sometimes changes happen when you just know that it is a stage of evolution in your illness that will change how you manage each day for good. How do you handle disease progression, knowing that from this day forward things will likely not be the same again?

For me, it seems like every time I have a significant medical event, flare, or emergency my symptoms progress with more permanency. My most recent hospitalization has left me feeling as if this again is a sign of disease progression from which my strength will not fully rebound. The fatigue, weakness, and pain have increased; and although some days are still better than others, my best days are still worse than ever before. I have lived with this illness for long enough to know that this is another turning point in my life. 

How does one cope with the knowledge that you are living with a chronic, progressive illness that will continue to require alterations in how you manage life? How does one move past the pain of losing more and more control over your body? How does one manage the fear of losing more independence and requiring increased help from others? These are things that healthy people can never fully understand. 

Illness progression can evoke feelings of loss, anger, hopelessness, and fear. It causes feelings of uncertainty about how you will continue on with your life. What does my future hold? What will my level of functioning be in a year, five years, and ten years down the road? If those of us living with chronic, progressive illnesses focus on our uncertain future we miss out on our life in the present. It can result in depression, isolation, and loss of hope. We must remind ourselves that we have a choice to make. We can give up, or we can choose to accept our limitations and focus on the abilities we still have.

I still get angry at times when I cannot participate in activities I once used to enjoy. I have moments of weakness, fear of what my future holds, and thoughts evoking depression over the pain and losses I’ve endured. We all experience these feelings from time to time when living with chronic illness. It is in these moments when we are most vulnerable, and in need of the most support. I’m happy to say that regardless of my setbacks, I will still persevere. I don’t know what my medical future will look like, but with the support of my family and friends I will continue to live, love, and look to the future with strength to carry on. 

The Importance of Being Your Own Advocate: You are Your Best Doctor

Knowledge is power, especially when you are living with a chronic illness. I was reminded of the importance of educating myself and my loved ones about my illness and my needs this week when I ended up in the emergency room with unexplained, life threatening symptoms. 

When you have a rare illness such as mitochondrial disease, like myself, you can expect to be on the receiving end of dumbfounded looks from doctors and nurses in nearly every medical facility you frequent. The fact of the matter is that you and your loved ones are probably the most knowledgeable people in the room when it comes to your illness and your needs. Doctors just are not familiar with how to manage rare diseases in these situations. This illustrates the importance of understanding fully how your illness affects you, and what your needs are in emergency situations. 

Understanding your needs is only half of the equation, however. If you cannot effectively advocate for yourself, or identify a trustworthy companion to advocate on your behalf, then you will never receive the care you require. You must be vigilant in emergency situations or your life literally could be at risk. In my case, I must remind the medical personnel not to give me traditional IV fluid each time the IV bag is replaced because it is toxic to my system. I am required to monitor my own medications due to the constant mistakes in medication management in the hospital setting. I need to ensure they do not use traditional anesthesia protocol on me as it can be fatal due to my illness. A simple trip to the emergency room can turn into a life threatening mistake if I or my spouse are not vigilant in ensuring that the medical team are fully educated about my illness and my needs at all times. 

They don’t always want to listen. Many doctors feel as if they know best, and they aren’t here to take orders from the patient. It is imperative though, if you have a life threatening chronic illness that you advocate for yourself regardless of the feelings of the medical staff. If you are not receiving the appropriate care you require then it is best to seek alternate care elsewhere. Take your medical care into your own hands and make sure you know what your needs are. You are your best doctor. 

Sometimes the loneliness hurts worse than the pain. 

When you live with a chronic, debilitating illness you likely share common symptoms of pain and fatigue, but you probably also understand the often overlooked symptom of loneliness. The resulting isolation that inevitably accompanies anyone carrying the burden of living with a chronic illness is often the most painful and difficult effect of chronic illness one must face. 

I find myself struggling with this symptom the most on this day. New Year’s Eve is one of my favorite holidays. I used to love getting together with family and/or friends and ringing in the new year with fun and fellowship with those I care about. I look forward to watching that glamorous shining ball drop slowly from the tower while we count down to the upcoming year waiting for that first kiss of the year with my wonderful husband. I loved wistfully dreaming with friends about what the future may hold for the following year, hoping that next year will be better than the last. It was the end of a chapter and the beginning of a new adventure, and tonight I find myself closing this chapter alone because of this stupid thing called mitochondrial disease. 

Chronic illness doesn’t just take away your physical abilities. It doesn’t just make your mind less sharp. It seeps its way into every fiber of your soul, and every aspect of your life. It makes your friends slowly forget who you are. They lose your number and forget where you live. They forget you can’t always go out but never come over, and therefore you merely disappear from existence. I’m so grateful for my husband who will always be by my side supporting me, but with his job I find myself often alone during the most joyous of occasions. New Year’s Eve, Christmas, July 4th, always alone. Alone with only my pain to keep me company. Sometimes the loneliness hurts worse than the pain, but the pain always causes the loneliness. Maybe next year will be better.