As a facilitator of a support group, It’s important I listen to the needs of both parties, the chronically ill and the families and friends of the patients, As a chronically ill patient I often forget to see the families, spouses and friends side to dealing with chronically ill patients.
When you are not feeling good, fatigued, no matter what your symptoms are, your family and friends may not understand your symptoms and yet they feel helpless to what they can do to help.
Families and friends want to cure patients, always hearing the latest information on the internet forwarding to the patient, finding a cure through a friends grandma, or just someone they talked to has your cure. It’s not out of anything other than their love for the patient,
Spouses will sometimes answer your sentences for you, which in return makes the patient feel incompetent, The frustration of the family’s or friends idea of what the patient should be able to do, or not do, walk faster, or drive further, drive faster or further, not nap or take a nap or tell you what you can contribute to an event or not contribute.
Knowing it’s all out of love, I understand, but I wanted to bring this subject up for families and friends of chronically ill, because We have to accept our illness in order to move forward, We have to grief who we use to be and accept the new us. We have to learn our limits, how far we can push our selves, if we feel the pressure to do more, we will and then we will pay.
When I say pay, what I mean is, I maybe more fatigued, may not be able to get out of bed, have more drop attacks, We slowly have to learn our limits, If we feel like we must do more out of guilt we will do what is asked, with payment the next day or few days.
It’s difficult as a patient to talk to your spouse and or family or friends about your illness because they get tired of hearing about it, I understand that, This is why it is so important for patients to talk to a local support group or counselor if necessary so you can release your thoughts with out feeling like a burden.
Journaling also helps to release some of that brain talk and thereare several different types of journaling, Many resources on line,
I just felt this needed to be said to the other side of chronically ill patients and families and friends. The love our families and friends only want to help, but the best way to help is to just be there. help support them, You job is not to cure us, to fix us or to tell us our limits, We kow all this information our selves, so let us tell our family, friends ect what we can or can not do. If there is progress in our illness, or a new treatment plan or a new Dr that we want to go see.
Let us know it’s ok to be us! Accept us and our illness and let us know you love us with or with out the illness.