My life isn’t easy and if anything, it is chaotic. There are so many things that are put aside in my life because of chronic illness and the chaos that it brings to my life. Quite often, I am in a foul mood because of the pain and the fatigue that I think I am unbearable to live with. I feel sorry for my husband and my children. I feel like they deserve better. I love them more than my own life but I l have learned that chronic illness is not just about the person dealing with the disease; it is a family affair.
Chronic affects more than just the patient. It affects your partner or spouse, your parents, your children and your siblings. So many of us feel like we are misunderstood by our families because it may seem like our families are not very sympathetic to what we are going through. So many of us have come across family members who think we are whiners, complainers and hypochondriacs. They treat us like we are just simply seeking attention.
We try not to complain about how we are feeling because it seems pointless but it comes out whether we want it to or not. It seems like those closest to us get the bulk of it and we tend to feel guilty about how we respond. Part of it is that when we are having our “bad days,” we forget that our families do not really understand what we go though because they are not living with our diseases. No one can really understand what it is like living with chronic illness unless they are in the same situation.
Parents of chronically ill children feel as if they do not have a chance to live their own lives. Siblings of chronically ill patients always feel left out because it like their parents pay more attention to the chronically ill child than they do to them. Children of chronically ill parents learn early on that mommy or daddy may not always be able to spend time with them or that mommy or daddy isn’t always dependable.
As the patients, we learn guilt in the worst possible way. It is really hard to learn to stop feeling guilty for being sick and needing help. The only thing we can do is learn to understand that we did not choose to be sick and if we had our way, we would not ask for help from others. This guilt makes chronic illness worse, adds stress to our lives, and makes feeling better much harder. The best we can do is to learn to let go of the guilt.
We must learn that continuously complaining about our symptoms and illness isn’t helpful either. While, it is true that chronically ill patients need someone to complain to, it does not have to be our families. That is what support groups are for. Our families already know we are sick and they really don’t need to hear about every symptom we are having every single day. The last thing we want to do is alienate the very people that love us.
In my own life, I have accepted that I can’t do everything and I can’t constantly complain either. I want to do everything and I want to complain about my symptoms but there are more important things in my life than being able to conquer everything and wanting sympathy. We all want sympathy and the ability to be strong but with chronic illness, we can’t always have that. We have to learn to let go – which is easier said than done. For better or for worse, it is a choice we make every single day: to be happy despite chronic illness or to be unhappy with chronic illness. Because amongst all the chaos that is our lives, we still have people depending on us to get through every day. If we can’t, they won’t be able to either.