ME/CFS, Fibromyalgia & Marriage - It All Comes Down to Trust

The damage ME/CFS and/or Fibromyalgia does to a marriage can be profound.  Its invisible nature makes it seem phantom-like, drifting in and out of reality (except to the sufferer, of course, to whom the disease is never, even for one moment, forgotten).  Since there are no blood tests to prove its existence, there can be a veil of distrust and resentment that hangs over the relationship.  No matter how supportive your spouse is, there is always that nagging question in your mind  "Is he supporting me out of a sense of duty or does he really believe I'm suffering?". 

I often wonder how long my husband will be patient with my ME/CFS & Fibromyalgia. Will there become a time when he finally says "That's it!.   I've been putting up with her claims of this debilitating illness for years and there's no proof that it actually exists. It never gets better and no doctor seems to be able to help her. Have I just been a victim of her delusional hypochondria all this time?"

Then of course there's the self-doubt. Maybe I really am crazy. Maybe this really is all in my head or I just have too many negative thoughts and emotions. These crazy ideas don't last long, however, when the pain or fatigue reminds you - this is definitely NOT "all in my head."

Most people don't like to complain about their pain because they know it can be trying on their friends and families and also they don't want to appear weak.  Unfortunately, with ME/CFS & Fibromyalgia, the moment you stop complaining, your suffering is forgotten by many around you.  You look fine, so why shouldn't you feel fine.  When I first became ill, I complained all the time, trying to get sympathy from my husband who, I thought, didn't at all comprehend what I was going through.  I'm sure my complaints were interpreted in a different way from his point of view however.  Now I try not to complain as much or moan and groan when my pain is particularly bad and my husband is more likely to ask me how I'm feeling. I can definitely say our relationship is much better for it.

With no way for your spouse to directly experience what you are feeling, it all comes down to trust.  If a marriage is built on trust it has a good chance, I think, of surviving ME/CFS and/or Fibromyalgia.  It definitely takes patience and understanding from everyone involved.  Spouses have to learn to be patient with their ill counterpart and just as importantly, the sufferer has to be understanding and realize how difficult it must be for her spouse to see her hurting and not be able to do anything about it.  In a marriage where one of the two is afflicted with ME/CFS and/or Fibromyalgia, both definitely suffer, just in very different ways.

Oh....My Beautiful Garden

When I returned to Catalina after being gone for so long, I knew one of the things I would have to confront was the state of my beloved gardens.  The only people here while I was gone would never have  noticed (or cared) that a plant was withering away and dying from lack of water.  Actually, it wasn't as bad as I had envisioned.  It had rained several times while I was gone, so it was more a matter of overgrowth than anything else.  I did loose one Thyme plant that I'd grown from seeds because it just wasn't mature enough to handle the long dry periods, but I couldn't really complain.

Every time I walk out my door I am reminded that I am unable to kneel down or bend over my beautiful plants to care for them.  The weeds have grown in all the spaces between the bricks.  Only I haven't forgotten that the bricks are there I think.  One plant has grown across more than half of the walkway I use to get to my washer and dryer.  Every time I step around it I cringe and think "one day I'll feel well enough to get my shears out and cut it back".  I've been home for fourteen days and it hasn't happened yet.

Before I got sick, the garden was one of my favorite, most peaceful places to be.  When I went through a very difficult time, at the end of an eight year relationship, the garden saved me.  I spent so much time there and felt so at peace touching the plants and dirt.  The two cats that have lived in the garden for the last three or four years sat near me while I pulled weeds and trimmed plants. 

I so miss being with the plants and the dirt.  I hardly see the cats anymore and the garden is overgrown and messy looking.  It feels like a symbol for all the dimensions of my life that have withered away or have been overgrown like the bricks in the garden.  Meanwhile, I watch helplessly, as it becomes wilder and wilder, returning much to the state it was in when I first moved here five years ago.