Original painting by Gina Welds-Hulse
When our lives have been so devastatingly altered by chronic pain and illness, with not a single facet untouched, the support we receive from friends and family becomes all the more essential. But one of the many ironies of a life with chronic pain is that at the very time you need the love and support of those you care for most, those relationships are so often challenged and affected by the same cause of that need.
I have experienced this personally and have also connected with others who have experienced this, so I decided to write this letter.
Dear friends and family of those with chronic illness,
I’ve been struggling with chronic illness for going on 15 years now, but it got really bad about 5 years ago, and the last 2 years or so it seemed to take over my life.
Chronic illness turned my life upside-down. I had to give up a lot....including work. Yes, even keeping up with work became a challenge. I had to go part time in a job that I loved. I eventually had to quit when it became too diffuclt to keep up with the demands of work. Chronic pain was gradually stealing the life that I had worked very hard to build. I had to quit karate. Painting became a challenge also. Over the past year i have gradually worked to rebuild some semblance of a life that chronic illness had stolen from me. I started to paint again, and set my sights on an art show that is now just a couple of weeks away. I stared training in martial arts again, but have since had to stop again due to illness and complicated health issues.
I knew that these kinds of health issues would make big changes in my life, but I don't think I was quite prepared for the changes it was to make in my relationships, friendships specifically. Health changes really do undermine friendships.
When we are dealing with chronic illness, pain or discomfort some friends just aren't sure how to act under the new set of circumstances.
When you’re sick you constantly have to think about the repercussions of every action. We have to weigh how much energy it will take, what the effect will be if we overdo it. How will we feel tomorrow?
Don't get me wrong. I know that I have not been the greatest at keeping up with certain relationships. I have had to be really selective with the activities that I partake in. As a mother of 3, and one that still depends on me I also have to be careful to have the energy to be a mother while dealing with a chronic illness.
I get it, I really do. People who love us want to help us. I've had some friends reach out to me. The trouble is that many of my friends are overseas. However, I was a little shocked when many of those whom I considered friends here turned their backs on me. Some just stopped calling me. When I called, I was given an excuse of why they couldn't talk. Some people attacked me verbally. The sad part is that I know that I am not the only chronically-ill person that this has happened to.
I am writing this now because it needs to be said. Chronically-ill people do not want to be sick. We did not choose to be ill. Yes, I am in a position now where I am fighting with everything in me, but I know that there are others out there who are struggling with no around to help them or reach out a hand.
Losing friendships is a whole different kind of pain. I guess people find it easier to deal with death than it is to deal with a chronic illness. I think it has something to do with the lack of commonly understood rituals for persistent stress or sustained grief. There are no rituals for the grief that keeps on giving or the stress that becomes a way of life, like a chronic illness.
We try not to take the loss of friendships personally, although we still care for and need our special people in our lives. However, sometimes we also realize that sometimes these loses are blessings in disguise...at least that is how I look at it these days. I've realized that some of those friends were really not true friends to begin with. Instead of focusing on the heartbreak of losing friends, I have learned to let go, have compassion for myself, and know that new friends do appear.
I understand that sometimes these things happen because of inexperience. Some people just don't know how to deal with someone with lupus, who practically lives at doctors' offices. Some friends who have not experienced loss or pain on this magnitude can't really understand the daily fatigue and pain. However, please don't make us feel embarrassed, flawed, or inadequate because of the pain. That hurts even more than the physical pain we are feeling.
I will end this with a statement of gratitude to those friends who have stuck by me, and to those friends that I have gained in the process.
Remember that those of us with a chronic illness are doing our very best and truly cherish the comfort and affection of our friends and loved ones.
I love you all. See you soon.
Love,
Gina
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