Does Your Family Support You?
Q. When I am quiet about my symptoms, my family thinks I am well and coerces me to do more. How can I stress to them that this is not healthy for me and it pressures me to do things I cannot do?
Rose: Most of us are dealing with “periodic denial” regarding our illness. We get caught up at a time of low symptoms into thinking that perhaps we really aren’t sick, and perhaps if we tried this, or tried that, we might be well. We take this denial and put it in the back of our heads…only to have it creep out at times when others try to push us.
I find that many times when I am with people who love me, I want to prove to myself that I can still do things. I have to fight this urge constantly. And because chronic illness can be invisible, the people we love sometimes forget what we are dealing with. They want us to be our “old selves” and do what we used to do. This suggestion gets caught up in the above denial and we then have a toxic combination.
Before you see friends or family that tend to be in denial about your illness, speak with them. Use a phone call or an email to suggest an activity that you can do. Remind them that your endurance is poor, and you should not or are unable to maintain an activity as you once did. Explain to them in a tactful way that you do not want to be pushed or shoved into an activity that you cannot do.
If your friend or family member still continues to push you even after your chat about your illness, it is time for a decision on your part. If you are constantly feeling pushed and shoved into situations that are hazardous to your health, this person is not thinking about you. For whatever reason, whether it is denial or disbelief, your friend or family member is not respecting you. Remember you are your own best advocate. You have to take care of you. And no one who cares about you or your welfare would want to keep you from doing that. Its time for another heart to heart.
When spontaneous activities come up, this is where you have to make your choice. If it is something that is dangerous for you to do and against doctors orders, do not attempt it. If it is something that may cause an increase in your symptoms, you may have to decide whether it is worth it to you. There have been many times when I traded a once in a lifetime experience for an increase in symptoms. But it was a very conscious decision on my part, and one I thought about for a long time. Decide along with your doctor what these things are.
(c) 2005 Frannie Rose