Living With MDS: The Impact Of MDS On Your Loved Ones
Published: Oct 11, 2012 11:10 am
Have you ever thought about the impact that myelodysplastic syndromes has on your loved ones, especially your caretaker?
When you don’t feel well, the people who care about you often suffer too. They suffer many of the same things that you suffer as well as many things you don’t.
Caretakers often suffer the loss of the well person you used to be. They mourn that loss often as acutely as you, the person who is ill. Sometimes they mourn the old you more than you do.
You frequently don’t feel well enough to do something, but the caretaker feels fine and is now faced with a new problem: Should I do this thing that I wanted to do without the person I used to be able to do this with? Will I even enjoy it without them? How will they feel being left out?
This is a common problem between the ill and those who care for them. The person who is ill feels that they would like to say that they feel up to doing something, and yet they know they don’t actually feel up to it.
When I was recovering from my bone marrow transplant, I would sometimes think that I was actually up for an activity only to find myself in the middle of the activity, completely unable to cope, sitting down on the sidewalk because I was dizzy and nauseous.
Not knowing from one moment to the next how you will be feeling or what you might actually be able to do is of course a big part of being sick. Wishful thinking often comes into play on both the caretakers’ side and the sick person’s side. The unpredictability of illness strains everyone’s ability to maintain a sense of humor.
With a disease that is chronic like myelodysplastic syndromes (MDS) often is, it can be quite difficult for a person who cares about you to understand what precisely you are experiencing. Sometimes you don’t appear ill, certainly not in the way like someone who has a broken leg or the flu. Often the caretaker thinks that you must feel better than you do because you don’t look ill.
After you and your caretaker get used to your illness, life can seem almost normal.
However, with MDS this “new normal” is not going to go away. The burden of a long-term illness wears and frays the best and most caring relationships. I always think about how helpless I felt when my children were sick. It is very hard to watch someone you care about be ill, you feel like the things you can do are insignificant.
That’s why I think it’s particularly important to realize that your disease not only has an impact on you but also on the people around you.
That’s why I also think that it is very helpful if you can acknowledge your caretaker’s contribution to your quality of life. Whether it is cooking you dinner or picking you up from chemo, gratitude and thanks are always welcome.
Acknowledging the effort and time your caretaker has put into showing their concern is a way of honoring their contribution to your health.
Sometimes your positive outlook or a smile on your face is worth its weight in gold to your caretaker.
- Beacon SiteUpdate – Patient And Caregiver Columns To Be Added To The MDS Beacon
- Caring For A Loved One With Myelodysplastic Syndromes – Part 3: Loss, Grief, And Bereavement
- Caring For A Loved One With Myelodysplastic Syndromes – Part 1: Making Your Own Health A Priority
- Caring For A Loved One With Myelodysplastic Syndromes – Part 2: Doctor Appointments
- Caring For A Loved One With Myelodysplastic Syndromes – Part 4: From A Patient’s Perspective