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Living in a World Apart

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Holiday season is upon us, and that fills me with dread because it means lots of visits with extended family who see us only rarely. Our invisible illnesses become even more invisible at these times. I have been able to improve my condition and my son’s greatly in the past 10 years, thanks to a variety of treatments, but that has only made my invisibility worse. The more I am able to be out and about “in the real world,” the less that others understand how much I struggle every moment of every day. My close friends and my immediate family intimately understand my challenges because they interact with me frequently.

The rest of the world, though – acquaintances, friends that don’t spend as much time with me, and extended family members – see someone who looks vibrant and energetic. They think that my restrictions are self-imposed, that I’m exaggerating my illness, sometimes even that I am looking for attention. Nothing could be further from the truth. I would give anything to live a free and active life again – to eat whatever I want, to have a glass of wine or beer, to exercise intensely, to stay up late, and to do all the things I am longing to do.

Because I am generally a happy person, usually smiling and cheery, and can now be out and about more, most people have no idea that I have to be constantly vigilant about what I am doing, eating, and how I am feeling. Some think (I know because they have said so) that I “focus too much on my illness.” They just don’t understand that to ignore my limits for even a brief period of time is to sentence myself to worsening symptoms and a crash. That constant mental monitoring is exhausting in itself; I would love to be free of it.

Holiday gatherings can be especially difficult. The physical challenges alone are exhausting, but the emotional struggles to be understood and somehow try to enjoy my family and friends can be even more draining. Very often in these situations, I feel like I am living in a shadow world, separated by a curtain that no one else can see. Sitting down while everyone else is standing, drinking water while others are imbibing, and needing a nap after lunch are just the obvious manifestations of this apart-ness. Conversations are difficult, too, when others are talking about running a 5k or traveling to far-off places or exciting plans for the weekend. How do I explain that all of those things are impossible for us?

The answer, of course, is that I don’t explain in a social situation. It’s impossible for people leading normal lives to understand how different our lives are. To try to explain would only alienate them and make them pity us. So, I just smile and keep my mouth shut. By the end of a social gathering, I often feel as if I haven’t honestly interacted with anyone. I’ve always been an upfront person – what you see is what you get – so this kind of superficial interaction feels false and unsatisfying to me, but often, it’s the best I can manage without alienating my loved ones.

Here are some tips on how to cope this holiday season (and beyond) during social gatherings – I can use these reminders, too!

Be open and honest about your needs. I find that a candid but matter-of-fact approach works best. I will just say that I need to sit down or can’t go along on the after-dinner walk because it’s too much exertion for me. If I’m talking to someone who doesn’t know about my illness, and it comes up, I will offer a simple, “I have an immune disorder” and only explain further if they ask. A straightforward approach seems to work best.

But don’t dwell on your illness with other people. Long experience has taught me that even if people ask, the gritty details of my illness will usually result in a look of pity that I really don’t want. I’ve found it’s best not to emphasize my illness too much in social situations. A brief explanation works best, and a string of complaints will only make me feel more isolated.

Take care of yourself. Though I don’t focus on my illness in conversation, I do make sure to take care of my own needs, quietly and without fuss. After Thanksgiving dinner, I asked my two young cousins if I could nap in one of their bedrooms and slipped upstairs. The same is true for dietary restrictions. I don’t burden others with my complicated diet but just select lots of veggies from the buffet, leave the potatoes, and ask if the gravy has milk in it. This year, I was pleasantly surprised that my aunt held out a bit of plain sweet potato for me, without all the sugar and milk added in, and my cousin asked what we could eat before planning the big dinner she hosted.

Accept that some people will never get it. This has been the toughest one for me because those who really don’t get it happen to be those closest to me. It’s still painful, and I am still working on it. I recently read that holding onto bitterness and resentment eats away at you and causes you to remain the victim. It’s far healthier both mentally and physically – though very difficult – to let go of those resentments and accept people as they are, flaws and all.

Find Your Support Network. This helps me so much, especially during the holidays. I have found my people online, connecting through Twitter, my blog, and Facebook groups with others who share my illness and understand exactly what I am going through. I can admit to them that I am dreading a family gathering without feeling guilty. They understand my mixed feelings and my relief when I am finally back home on my couch, resting and recovering.

I am blessed in many ways and am grateful for the gains I have made these last few years. Sometimes, though, it is frustrating and demoralizing to be constantly misunderstood. It is a paradox. If I cover up my struggles and act like everything is fine, then people underestimate my illness and its effects and perhaps even think I am exaggerating it. On the other hand, if I am too open and honest about my struggles and limitations, then people think I focus too much on my illness or they pity me. It’s a fine line to walk. I am just grateful that I can enjoy some interactions with my family, even if they aren’t like the old pre-illness days, and that there are people close to me who know what my life is really like.

Suzan Jackson is a freelance writer who has had ME/CFS for 16 years and also has Lyme disease. Both of her sons also got ME/CFS 14 years ago, but one is now fully recovered after 10 years of mild illness and the other just graduated from college, with ME/CFS plus three tick-borne infections. She writes two blogs: Living with ME/CFS at http://livewithcfs.blogspot.com and Book By Book at http://bookbybook.blogspot.com You can follow her on Twitter at @livewithmecfs.

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