Letter to Significant Others
-From the Fibromyalgia Advocate by Devin J. Starlanyl, M.D.
I have given you some literature on some of the facts about my chronic illness, but there are other things that you should know to help us get through this together. I want you to know what I need, and I want you to be free to tell me your needs. I donít need a martyr or a hero. Chronic illness is not helped by martyrdom or heroics, but how we both cope with this illness will affect the quality of our lives together.
I do need a companion. I also need a partner. I need you to be understanding, and willing to travel this confusing path with me. Neither of us invited this illness (or illnesses) into our relationship, but itís here all the same. It wonít go away if we ignore it.
Iíll try to do everything I can to reduce the pain, fatigue, and other symptoms they have brought. Things have changed for me. I am not the same person I was before MFS/MPS. That doesnít mean that I am a lesser person.
We are still equals, and my identity and life are still important, and so are yours. My values and beliefs are much the same, and the love we share is still there. The passion is there, but the packaging has changedóas the packaging of everyone changes with time and with living. With your help, we can both evolve to have a richer, more meaningful relationship. But I need your help for this, and you need mine.
Change is never easy. I need help to cope with the uncertainties that a variable chronic pain condition brings. I need for you to understand that what I can do one day I may not be able to do the next.
Overdoing means I must pay for one dayís actions in pain and fatigue on the next day. I will need you to understand that sometimes the risk is worth, and sometimes it isnít. I need you to be my advocate when my words fail and my steps falter.
I need you to be free of guilt and allow me to be the same. I need you to help explain that my condition is real, when neighbors and even family insist that I look just fine.
Donít leave me in isolation. I need your intimacy more than ever. I need to feel desirable, even though sometimes my symptoms arenít very romantic. I need a gentle hug or the soft touch of a compassionate hand to remind me that I am not alone.
I need you to remind me that unaccountable irritability is a symptom of FMS/MFS, and that when Iím in pain, my patience runs out too quickly. We both need our space, and we both need to escape sometimes. We can find healthy ways to do this.
Itís OK if you donít know how I feel, and have to ask. Itís good for me to get a reality check sometimes. I know I get moody, but please let me know when I do. Please be OK with me warning you when I am having a bad day and need my space. Give me a cheery word, sometimes that is all I need to feel better. It is important we maintain open and easy communication between us.
There may be times when I canít go to events you would like to go to, or do the things you want to do with me. These are not my choices. We can find ways around this without becoming negative. Negativity adds to my illness, and does no one any good.
I know you must get sick of dealing with my illness. So do I. Remember that I am more than my illness, and those other facets of my personality need nurturing and can nurture yours. There are many things we can do together, and many memories of joy we can build. I will need your help to find them, and you will need mine. And that is how it should be.
I may find some types of sexual activity painful at times. At other times I may be just too exhausted. We can talk about this. There may be a way around the problems. It doesnít mean that I donít want or require a sexual relationship with you. We will just have to find a way to make it possible and it may take a little extra effort. It could mean that I need to do some stretching exercises earlier, or use a heating pad, or see a doctor. Maybe we both need to see a counselor. But we can find a way to work things out, because our relationship is important, and sex is a vital part of our relationship.
We need to give each other space, but we need to support each other, too. We will be adjusting our relationship to accommodate FMS/MPS, but we can do it in a way that will bring us closer.