You Don’t Know

Being chronically ill comes with more pitfalls than how you personally feel on a daily basis. It also comes with how your friends and family think you feel, as they attempt to identify with it from their personal experiences. For anyone that has never read “The Spoon Theory”, I really recommend you look it up on the web and do so. It’s one of the best things ever written about the difference between a normal hand dealt in life and the challenges of surviving a catastrophic disease.

I’ve been faced with difficult health challenges my entire life. What some people would find unbearable if it were dropped on them partway through their life is my personal normal. I’ve never known another existence, and so it is just my routine to do the things that I must to make it through each day. People with autoimmune inflammatory diseases become great chameleons, learning to fit in visually (even if not realistically) with others in social settings so as not to seem damaged or pathetic. We don’t really want to live this way, but we also don’t have a choice. Just because we smile, laugh, visit, or shop with you doesn’t mean nothing is wrong and it doesn’t mean we’re not paying for it later. We do. You never get to see that part. It’s just that we can’t spend all of our time yelping at every single stab of pain, or gloomy at how hard it is to get up and do things. Most of what’s happening to our bodies is an internal war anyway. This is why Lupus is the “You don’t look sick” disease.

If you’re a basically well person and you know someone with an autoimmune inflammatory disease (and if you know me, then.. you do), stop and think before you say that everyone gets tired or you understand. You really don’t. You don’t know what it’s like to feel like you literally can’t stand up in the morning to walk to the bathroom or to the kitchen to make breakfast… You don’t know what it’s like to day after day not even care about eating breakfast because the very thought makes you nauseous. You don’t know what it’s like to look in the refrigerator 10 times and not see anything appealing, but know you really need to eat. You don’t know what it’s like to hurt so bad you just want to curl up in a ball and sob, but you know if you do it will only hurt worse. You don’t know what it’s like to get sick every single cold and flu season because someone got careless around you and hugged you, and THEN said they had the sniffles… and then spend the next 4 to 6 weeks coughing and struggling to get well. You don’t know what it’s like to be in so much agony that you can’t stand up for a 2 minute shower, or maybe even can’t stand up at all… for months on end. You don’t know what it’s like to have to question your Drs every time they want you to try a new medication because you’re afraid of the horrible side effects from drug sensitivities, or have to tell people over and over what foods and spices you’re allergic to when they cook for you… and you don’t know what it’s like to have to spend more money on food at the store so you have something that agrees with you and will help you stay more well. You don’t know what it’s like for people to ask why you don’t go get a job when you’re thinking, “I wish I could…”… or to be accused of being lazy when you’re really just.. so very sick. You don’t know what it’s like to have a medical care provider suggest sending you to psychiatry because they don’t believe you either.

I have felt trapped inside myself forever. I have borne those labels of lazy, rebellious, sensitive, and irresponsible for as long as I can remember. They came from the people that are close to me, and so they hurt all the more. I don’t really consider “sensitive” a negative but that’s how they mean it of course. Somehow when people don’t see something obvious (or all the time), like a wheelchair or cane, or blindness or other clear-cut disability, they think that you can’t possibly need any help. The truth is that when you stack up all of the many continuous, uncomfortable to downright painful, various things that autoimmune disease can do to your body, it is exhausting, depressing, and debilitating. When you add to it the things it can begin to take away from your personal appearance, such as hair loss, skin conditions, and weight problems, it is insult added to injury – literally – and your mental state declines even more… as if it wasn’t already with memory loss and comprehension difficulties. Add to it the portion of the medical community that is disbelieving and graciously offers to send you to psychiatry, because they too think that you are simply whining or being a hypochondriac, and you now have isolation of the worst kind in the picture – no medical support on top of no personal support. I would like to know how any “normal” person would react to this kind of a life. If they were to experience it for a day, they probably wouldn’t be as quick to pass out labels on others in this position. I would say that I wish they could experience it, but I wouldn’t even wish this disease on my enemies.

I do wish at times that the people closest to me could at least realize there is more to this illness than meets the eye… and that there is so much that they are missing about the realities of it. A day of visiting, talking, and interacting – even when pleasant – is exhausting, and if there is travel involved it is all the more depleting for me. Others go home tired and sleep well, and they may be a little tired the next day. I go home feeling like a truck ran over me and can barely stagger to my bed, then sleep anywhere from fitfully to comatose and wake completely worn out the next day. My muscles ache, my joints are sore, my mouth and throat are dry, my eyes hurt, my mind is hazy, it‘s hard to move because I‘m stiff, and I just want to go back to sleep for several more hours. I usually don’t even have the energy to get up and feed myself. I’m not good company to keep a driver awake after any activities. I just uncontrollably fall asleep in the car. I can’t help it.

If you’re one of those people that I’ve given time to, whether family or friend, know that it is a sacrifice of energy when I do. I love my friends and family and so I do it, but please don’t think that it is trivial or easy for me. I used to work Renaissance Faire and I loved it. It was exhausting at best and became more and more difficult until I just could not do it anymore. I tried visiting a couple of years ago and I felt like I was dying when I got up in the morning. Apparently I looked like it too because people kept asking me if I was okay. That was while I was standing in the back of a pavilion trying to determine whether I could lace up my bodice without tossing my cookies and passing out. It hurts me to give up things that I love, more than anyone knows. The reality is that if I do not heed the warnings my body is sending, I could get very much worse and lose the ability to readily control the symptoms I live with now. It is my hope that the medication I am trying now will give me back something of my life so that I can go back to doing a few of those things again one day. I do not know how much hope I should place in that however… and it is hard to keep having things yanked away that you could once find a way to accomplish. This is an isolation that no one should have to live through. It seems with some people that if you aren’t able to keep up, they just leave you behind and forget. When you’re there and running around at their level, they tell you that you mean so much and are a great friend. They tell you that they will always be there and how glad they are that you met. When you become ill, many no longer care. If you drop out of sight, they don’t call… they don’t check… They forget.

The most supportive thing that anyone has said to me, to date, was to tell me that there wasn’t anything that I could have done to keep this from happening. I couldn’t help but to mull over the fact that I’ve spent my entire life making healthy choices, and trying to stay as natural as I possibly can. I’ve eaten right, sought better solutions, avoided damaging substances and chemicals, and done everything I could to maintain a clean existence. It makes no sense to me that I now face the worst health crisis of anyone in my immediate family, and all I could think was… what could I have done differently? The truth is… nothing. I did not choose to be ill, nor did I do anything that caused it. It just is.


About Tala

-Livestream Broadcaster - Active in Periscope & Busker -YouTube, Twitter, Instagram, & Facebook Pages Advocacy for better quality of life with catastrophic illness & injury. Conditions I live with myself are my awareness platform: rheumatic autoimmune & neurological, women's heart disease Traditional First Nations (Native American) -Training: Tai Ch'i Chuan, medical terminology, cultural Medicine -Avid about hiking, camping, & outdoor adventure Special Interests: Natural health, everything from East Indian to East Carolina cuisine, 16th Century German fencing Favorite Travel Spots: Yosemite, Catalina Island, E. North Carolina, Northern CA redwoods/coastal rainforest ~I live as naturally as I can, stay on a whole foods diet (as in what I eat, not as in "a diet"), avoid as many synthetic meds as I can, and do not consume artificial sweeteners and most preservatives. If you're curious about why, see my posts.~ Periscope/Twitter ID: Tala_NoExcuses

Posted on September 9, 2010, in I Am That Wolf. Bookmark the permalink. 3 Comments.

  1. Hey Tala! <3 I read everything you wrote and am really touched by everything you are going through. I just want to offer you support and for you to know that I truly care. I hate that you are going through this, and wish there was something I could do to help. I've had a wisp of a clue of what you were going through over the years, but your last two entries really gave me a bonk on the head. =) I definitely still don't "know" but at least now I have a little more understanding. I read the spoon theory and it was also really enlightening.

    As far as the people you love being the most insensitive, I think that's just how many of us are with the people we love the most. I can actually relate to this one. My mom has developed a form of dementia (possibly/probably Alzheimer's) over the last 2 years. Its been completely maddening and I've had zero patience or tolerance for it. I logically understand that she's not really there mentally, I logically understand that she has a disease, yet I can't detach myself from everything I know about her and from the roles we've held as mother and daughter for the last (almost) 40 years, and I cannot accept her disease. Instead of just agreeing with her delusions (as the experts recommend you do, to save their dignity) I can't help but correct her, and get impatient when she doesn't understand. I just don't believe that she doesn't remember how to use a phone or do simple things. I just think, "you have a master's degree! how can you not remember how to use a phone?"

    Its the WEIRDEST thing I have ever experienced, that I cannot detach and accept her ailment. I think its because of the emotional pain of it. I love her too much to emotionally acknowledge that this is really happening. My sister has done the same to me–she is a psychologist, yet she cannot accept that I have clinical depression. When I get depressed, she just wants me to "snap out of it". We worked together at her company (an outpatient mental health clinic) for almost 10 years, so I know she is an expert on depression. Yet, she can't accept that my symptoms are real. I wonder if the people closest to you who want you to "snap out of it" aren't going through the same thing. It's too painful to acknowledge that you are going through this daily, hour by hour struggle, so they choose to believe that you are just being "sensitive, lazy, rebellious" (etc.) That's definitely easier to accept and to live with. It pains ME to think about you going through this, I can't even imagine how difficult it must be for the people closest to you.

    The only little light of revelation that has come to me regarding my mom's condition, because I have been praying for help, is that I need to realize that this is not about me. That's been really hard. I just wish she could be here for me! But she can't … and I need to be there for her. I think that in time the people who love you most who want to believe you're just being sensitive, will come to their own realizations, and eventually accept that as painful as it is to believe, this is real, and they just need to be there for you. =)

    I guess this is more of an essay than a comment. =)

  2. Essay away, girl. We’ve known each other a long time and we both used to write some novels “back in the day”. Heck, that’s how we met. ;-) The only person that wrote longer posts than you and me was Craig and he was cutting/pasting from that newfangled thing called the Internet. LOL I miss him sometimes. He was a pain much of the time, but he was trying to clean up his life at the last there.

    All I can say about “close” people is something I learned when a long time ago about the phrase “Blood is thicker than water”. Ask the next person who says it to you, “What water?” and see if they even know what it means. It does not mean that relatives are a stronger tie than others, but quite the opposite. The detailed origin of it is this: The blood of a covenant bond is thicker than the water of the womb. So… Those that we choose to bond with in our lives are closer than the ties of a genetic relationship. I have seen this to be true in many instances in my life. It would be nice to think that relatives can offer as much, if not more, than friends and other loved ones… but often they just don’t seem to feel motivated to put the effort into it. It’s a taken for granted situation, as if you will always be there and there is always time for whatever it is… later.

    As of the 23rd, I’m now 43… and so at this point, I’ve kind of stopped hoping for a change in that department. It’s a long time to try to explain to anyone that you’re exhausted and fatigued, and that you can turn from sort of okay to feeling awful in an unexpected instant. There are a few true friends, such as yourself, that have been with me a long time that have a better understanding. Depression, as you mentioned, is the same way. Moods don’t shift slowly or predictably. They also don’t make themselves convenient for you or anyone else. They just happen. It’s also a sorry misconception that depression is the same thing as being sad. Much like what I deal with, people have a bad tendancy to say they understand and tell you things like, “everybody is down sometimes”. Maybe some relatives are actually TOO close to the situation… even though you might rarely even see them or hear a voice on the phone. I don’t know anymore. What I do know is that it’s not any fun to feel isolated and get comments floating back that were said about you that are demeaning & inaccurate. I have yet to figure out why people think they can get away with that.

    Re your mom… I think seeing an elder figure that should be strong and capable suddenly not be is extremely difficult. You’ll have to find your center on that one. I know you’re capable because you’ve shown me many times that you process things and find a way to accept and handle a thing that is better than your initial gut reaction. Heck, that’s how we became friends. ;-) Watching my grandmother decline the way she did was difficult in that way. She was always so capable, independent, and powerful. Then she wasn’t. It was night and day. One of the hardest things for me was listening to comments about how she was struggling for each breath with the COPD… and all I kept thinking every time I heard it was, “Gee, not like I know a thing about that…” followed by, “Could you stop already? I don’t need to think about my potential future in that light right now!” It is my hope to control certain aspects of my health issues better and not end up in such dire condition later, but that’s probably going to be based on improvements in medical treatment being developed. That said, it is probably part of why you’re so frustrated. You don’t want to consider the possibility of that helplessness in your own future. No one does.

    We don’t get to pick and choose. All we can do is care for ourselves the best we are able. Some things can me modified, a few avoided, but most we just have to adapt and learn how to live with them amicably.

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