“I wouldn’t worry, I think you’ll get better.” This is what the disability lawyer told me as I sat across from his desk, shuddering uncontrollably from the effort of sitting up for an hour. What I should have said was, “Oh really? What exactly makes you think that? Tell me why, after 15 years of being ill and no available treatment for my disease, you believe I will magically just get better. What exactly do you think will change?“ That is what I should have said. But I didn’t. I stayed quiet. I did look disapprovingly at him – but that is the best I could do. Honestly, I have just spent an hour outlining the crippling effects this illness has on me. I have told him how long I have had it. I have explained what my doctors say. I have shown him my personal activity log (though he did not look at it – in fact not one person in the medical or legal or disability field has looked at it). And now, after all of that, it becomes clear that he does not believe me. He didn’t believe me from the very beginning. He didn’t believe me because I am too articulate, too intelligent (his words not mine – though obviously he didn’t get a real handle on me in that hour), too respectable looking, and – here is the kicker – I am only 29 years old. I am too young, too smart, and too well dressed to be sick. So I will just get better. I should have dressed in pajamas and not washed my hair. It would have been much easier and, in the end, more effective. But then, there is nothing much I can do about my age. Funnily enough the doctor said the same thing as the lawyer. First he made it clear that he didn’t think my illness existed (whilst at the same time scaring the pants off me by telling me I would die if I didn’t get help for my heart problem immediately. I’m sorry, why do you think I am here? I am seeking help. I have been seeking help for a long time. ) Then he berated me, implying that my illness was my fault. Then he told me I had wasted my whole life malingering. Then he said, “I think you’ll get better.” He didn’t offer any suggestions on how to make this happen. As you can probably tell, these encounters made me angry. They also made me sad and humiliated and mortified and insecure for a while. But this is what I have learned from them: Create a team made up only of people who believe you Whether you are trying for disability and need an advocate or a lawyer, or you are seeking medical help and need doctors, natural practitioners, specialists – whatever you are seeking, the team you compile must believe you first. It is the first requirement. They must also be competent and educated and offer some kind of help. But first and foremost, before anything else, they must believe you. If they do not believe you they will not be able to help you. If they do not believe you they WILL NOT BE ABLE TO HELP YOU. Rather, they will cause you physical and emotional harm. After many unhappy experiences like the above I finally did some online research to find doctors who deal specifically with my illness. My philosophy was that if they deal regularly with my illness, they must believe that it exists. So that is one hurdle over with. (You should be prepared to travel if you do not live in a big city.) From this research (and with some help from my family) I did find a medical doctor who not only believed me but listens and works hard for me. She is competent and equipped. Her whole office is set up to prove that she believes you – from the questions on the new patient forms to the length of the first interview. She deals primarily in autoimmune diseases. (I travel 2 hours one way to get to her office. It is worth it.) I also work with a natural practitioner and she is the one that helps me the most. She is also competent and educated and listens and works hard. And she believes me. If your Doctor does not believe you, get a new doctor. The same goes for your lawyer. How can they fight for you if they do not even believe you? That is what I have learned. I have read so many stories of people who go to doctors that constantly undermine and belittle them, that do not believe they are really sick. And these people receive no help from these doctors. Yet they keep going. Don’t do this to yourself. You are the first person on your team. You must be the first person who believes you, who works for you, who listens to you. Find others who can do the same. How to know whether they believe you Both men in my experiences above proved that they did not believe me. Neither of them were rude and neither were being intentionally unkind. In fact, I would go so far as to say that both of them liked me as a person. They both talked in a kindly manner. They both took a good amount of time with me. Despite all of this, their words and the meaning behind them were shattering. They both said they believed me at first. But that wasn't proved true by the rest of their words. Listen to what they are actually saying. All of it. Some will say it right out. Some are more subtle. But if you listen to what they are actually saying, you will know what they really think. Entering the medical or legal sphere is scary. Doctors can be scary. Nurses can be scary. Lawyers can be scary. But not all of them are the same. You will be able to find a team that believes in you. You will be able to find a team that has something to offer. And now it’s your turn. Have you found professionals who believe and help you? If so, how did you find them? photo credit: HikingArtist.com via photopin cc photo credit: michael.heiss via photopin cc photo credit: deadstar 2.1 via photopin cc

Accepting our illnesses is not a sign of failure. It does not mean we give up. We simply advance in a new direction. It is true we may have lost much. (See It’s Ok To Grieve Your Losses.) However, we also need to understand what is still there. Here is a plan of action for moving forward. Evaluate your condition • Think of what you need to alter and then seek to change what is changeable. This will help you reclaim some control. (Some things you may be able to change are diet, sleep habits, mental attitudes, household arrangements, healthcare, work, exercise, daily activities, the way you get around, the way you care for yourself, etc... With the help of loved ones, perhaps you could set up some systems or strategies to help you accomplish what you can’t do alone. See also the posts under Energy Economy for suggestions on changing what is changeable.) • Ask yourself, ‘What was important to me before I got sick? How has this changed?’ When you ask these questions you are trying to determine two things. 1. What is still possible for me. 2. What my priorities are. • Focus on what you can do now, not what you used to be able to do. Comparing yourself to yourself, what you used to do, is just as destructive and counterproductive as comparing yourself to others. Focusing on what I CAN do helps me to feel that although my life has changed it is not over. It helps me to understand that I still have worth as a human being and that my life still has value. And it helps me to move out of the depression and find joy in life again. Set Reasonable and reachable goals (i.e. keep pushing gently forward) • Do not set too many goals at once. You will sabotage yourself. • Make sure your goal is reasonable for you. Do not compare yourself to someone else with your illness or any other limitation. Your physical and emotional makeup is different than any other individual’s. • Your goal should be specific – not generic. • Your goal must be reachable or you will give up. Start small. No matter how small a goal may seem, reaching it motivates you to do more. • When you have reached your goal – pause. Allow a leveling off period. Then move to the next goal. • If it becomes clear that a certain goal is unrealistic let it go. Try not to feel bad about it. At the same time do not totally give up. Set a new, more realistic goal. • Some goals to consider depending on your level of health: Re-learn how to wash your face. Walk for five minutes two or three times a week. Sit up for 20 minutes a day. Set a goal to help others somehow. Go outside once a week. Regain strength in your hands or legs. Learn a skill, like painting. Work part-time. Cook dinner every day. Rest when you are tired. Read something everyday that feeds you spiritually, Etc… Setting goals directs our minds toward the future and reaching goals gives us a sense of accomplishment and can help us restore some self-confidence. We may discover that we can do more than we thought possible. Setting goals helps us to advance in our new direction. Stay in touch with others It is incredibly easy to become isolated when you are coping with an ongoing, disabling illness. People may stop visiting you. You may not be able to get out and visit them. Some of your friends may abandon you. You may realize that some of your friends are toxic and have to distance yourself. You may just be an introvert and inclined to be alone anyway. But having social contact is not just important, it is vital to your health. It is an actual survival tool (and I say this as an introvert). I have three whole posts on this subject because this is a very big topic. Part 1 – Friendship is a basic human need (The Dilemma). Part 2 - Rethink the term friend. And Part 3- How to be a good friend when you are chronically ill. I’ll let them do the rest of the talking. Continue to Readjust In your struggle with chronic illness there will likely be relapses, set-backs, and progressions of your illness. You may also have remissions and otherwise better times. You will have to readjust your view of what it means to accept your illness many times. You may have to adjust your expectations of yourself over and over again. Sometimes we grow better, our health improves and what we can do changes for the good. This takes a period of adjustment. Sometimes we grow worse, our health declines and what we can do is more limited. This takes a period of adjustment also. I have found that the above methods – focusing on what I can do, setting manageable goals, and keeping some social contact – have helped me through every stage of my illness, whether I am bed-ridden or as reasonably well as I get. And now it’s your turn. What coping tools would you add to the above list, things that keep you moving forward in a positive direction instead of languishing in a negative one? Coming up: A Plan Of Action When Feeling Sad You may also like: Coping with chronic illness – knowledge is power Coping with chronic illness – cultivate other interests Two reasons why lying keeps you sick Coping with chronic illness - Let go of the dream, accept reality, and be happy Coping with chronic illness - What accepting reality does not mean And the growing list on energy economy - with practical suggestions for everyday life, like eating, cooking, shopping, dealing with people, wardrobe strategies, cleaning, grooming, etc... photo credit: michal_hadassah via photopin cc

Energy Economy - How to Declutter While Chronically Ill - Part 1 The last Coping With Chronic Illness post was about the difference between de-cluttering, organizing, and simplifying and why the difference matters. If you didn’t read that post you might want to. In the meantime we are going to be talking about clutter today. To de-clutter means to get rid of excess stuff. And for the purposes of this post we are thinking primarily of tangible stuff –things, possessions. So here are the first five suggestions. You can do these even while bedridden. First: Make a Plan Start planning your method of attack. You do need and idea of: where to start your work, what your goal or desired result is, what is aggravating you specifically, which items you love, and what you use (and why). This is a good thing to do while you are too sick or busy to do anything else. Second: Ask Six Questions Decluttering - Ask Yourself Six Questions While you are doing mental work get in your head these six questions: (1) Is it worth the energy and time it takes to use/keep/clean/store/use/worry about this item? (2) Would my life be simpler or more complex without this item? (3) Do I actually use this (or do members of my family use it)? (4) Do I really love this? (5) Do I need this? (6) Is it important enough to me that I will actually use my limited energy on it? These questions are very personal. Only you can answer them . Third: Answer the Six Questions Honestly If you lie to yourself your decluttering efforts will ultimately fail. To tell ourselves the truth we need to think realistically about our circumstances, our illnesses, and our lives. Will you really fix that broken item? Will you really re-purpose this other item? Will you really hem those pants, sew that skirt, embroider that top, fix that stain? What do you really love versus what do you love the IDEA of. They are two very different things. For example I am highly interested in sewing. I appreciate hand sewn things and I really like the idea of sewing my own clothes. But, when push comes to shove, that is never what I choose to spend my energy on. I only have so much energy – and I use it on the things that are most important to me and the things I love the very most. When you get right down to it, sewing does not fall into either category for me. Now, it is very different for my mother. It is important to her and she does really wonderful and useful things with her sewing. So you see, knowing yourself is important. Get rid of things on which you do not TRULY want/intend to spend the energy you ACTUALLY HAVE. The beauty is that this frees you up to do more of the things you really love. And it takes away the guilt over not doing these other things you “should” be doing. Fourth: Make a Keep vs Throw List Chronically Ill Decluttering - Make a Keep vs Throw List You can mentally go through things in your house and analyze it in the high beams of those six questions (and any others you think are important). Make a Keep vs Throw list. Every time you decide on an item, write it down in the appropriate column. It will be that much easier to do the physical part of the task when you are able. Of course, you won’t be able to mentally assess everything in your house. So this will only get you so far. But these steps are laying the foundation for success. It gets your head in the game. Five: Some Grounding Principles · You are a human being and it is OK to take up some space. · Don’t be afraid to make mistakes. These are not life or death decisions. It’s OK to have a regret or two. Look at the overall picture. · Don’t panic. Stop. Breath. Think. · You don’t have to get it perfect. Good enough is good enough. · Decluttering is not a religion. It will not fill your spiritual need. It will not ultimately give your life great meaning. It is not a higher calling. It will not fix all your problems. Don’t get me wrong, it’s a great thing to do and can be extremely helpful in having a more fulfilling life. But it itself does not make life fulfilling. Don’t assign it greater importance than it is worth. So that’s it, the first five steps in de-cluttering, especially for the chronically ill. We don’t have energy to waste. We need to make our blows count. Doing the mental work first can save us a lot of physical and emotional energy later. However, I hear what you are thinking. ‘Mental work is all very well,’ you say, ‘ but it doesn’t clear my house for me.’ Ah. Sad but true. At some point we will actually have to implement the plan. We will have to get up and throw some things away, empty a closet, and maybe dispose of some furniture. (Obviously that last one is something we do in name only – with the help of some strong young men. It still counts as partially our work.) So, in that vein the next Energy Economy post will handle how to actually, physically start decluttering our houses while living with an everyday illness. Hope you’ll stick around. And now it’s your turn. What are your thoughts on the above list? Do you have anything to add? More from Laina Laughing Coping With Chronic Illness posts: It's OK to grieve your losses Knowledge is power Do not eat, breathe, and sleep your illness Part 1 - Friendship is a basic human need (the dilemma) Part 2 - Friendship is a basic human need (who can be a friend?) Part 3 - Friendship is a basic human need (10 ways to be a good friend while chronically ill) Part 4 - Friendship is a basic human need (How to be a friend to a friend who is chronically ill) 2 Reasons why lying keeps you sick Let go of the dream, accept reality, and be happy (it breaks your heart and then rebuilds it) Accepting reality - what it does NOT mean 3 Ways to advance in a new direction 18 Ways to ward off sadness I Can't Do It Alone Talk. And Talk Some More. You Do Not Need To Justify Your Existence Coping with Chronic Illness - Dealing with Its Unpredictable Nature Coping With Chronic Illness - Other People Have Problems Too When I have no brain and no body Caring too much what people think keeps you sick Caring too much what people think - how to overcome it. 5 Ways to be a Good Friend to a Friend with a Chronic Illness Coping With Chronic Illness Exercise - Part 1 - Is it Good or Bad? Coping with Chronic Illness Exercise - Part 2 - 5 Myths and Facts about Exercise While Ill 5 Ways to Maintain Independence While Chronically Ill Coping With Chronic Illness - Part 3 - How to Build Strength while Chronically Ill Coping With Chronic Illness - For Better Health- Laugh! Living With Chronic Illness - What Decluttering, Organizing, and Simplifying really mean. Energy Economy posts: How to get food into our mouths while chronically ill part 1 Food part 2 Food part 3 Grocery shopping and chronic illness Wardrobe considerations for the chronically ill - part 1 Wardrobe considerations for the chronically ill - part 2 15 suggestions for Leaving the house while chronically ill 14 suggestions for cleaning the house while chronically ill Personal hygiene and chronic illness Dealing with people while chronically ill 12 Ways to simplify your grooming and dressing routines 10 Ways to COPE with Cognitive Dysfunction (Brain Fog, Fibro Fog) 10 Ways to COMBAT Cognitive Dysfunction (Brain Fog, Fibro Fog) How To Attend Important Events While Chronically Ill 10 Ways to Make it Through the Summer Heat while Chronically Ill photo credit: niftynotebook via photopin cc photo credit: misteraitch via photopin cc photo credit: left-hand via photopin cc photo credit: net_efekt via photopin cc

The Interesting Life Plan A few years ago, let’s say seven or eight, I decided that what with one thing and another (in other words, deb...

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There are few things better than afternoon naps. Chocolate is up there, obviously, as is coffee, a good book, non-clumping mascara, and rays of sunshine coming in through the window… But afternoon naps? Mmm. Love ’em. Given that things have been pretty serious around these parts lately with all the talk of responsibility and what...Read More