12 Chronic Illness (Autoimmune Disease) Survival Tips

I write this from my own personal experience. I’m not a doctor (although I feel like I’ve worked on a PhD in Wegener’s Granulomatosis over the last five years,) so take my advice with a grain of salt and the knowledge that each disease affects each one of us differently, even within the same disease, and the treatment protocol affects us all differently (not just because we have different docs who prescribe to different schools of treatment, but also because our individual physiology responds to the same meds in their own ways.)

I have found that despite all the differences, we share a lot of similarities, and if we focus on how to deal with the common problems, it will give us enough strength and fortitude to deal with the problems that are ours and ours alone.

  1. 01No more guilt. 

    You did nothing to deserve this disease. You did nothing to facilitate getting it. Scientists don’t even know what causes it… they know genetic predisposition (so there is something in your genes that makes you more susceptible) and they know of a trigger (this could be environmental, stress, a viral or bacterial infection, the list goes on and on) – there is no way you could have known ahead of time what your trigger would be. Because this whole situation is out of your hands, you have nothing to be guilty about. If someone else in your family got sick, you’d be there for them, doing whatever you can to make things better, just like you have your family beside you helping you. The feeling of guilt helps nothing in a positive way, and in fact could prolong your ‘down time’ because of the negative stress associated with these feelings.

  2. 02Don’t be angry at those who don’t get it. 

    This is our opportunity to take understanding, empathy and awareness for this disease group to a whole new level. Think about it. Even the medical professionals are in the dark about this group of diseases. Unless you get to the ‘specialist level’ of care, you are getting educated guesses at best. Many of these diseases are out of the realm of GP’s who treat mostly the most common of ailments. Ironically autoimmune disease affects 1 in 5 people and most likely account for a large number of the ‘mystery’ cases, that inevitably get treated with anti-depressants. This is one of the reasons so many people go undiagnosed for years, being made to feel like hypochondriacs, like crazy people, like an unnecessary burden on the medical system (while we are desperately trying to get a diagnosis and figure out why it feels like you’re dying on the inside, and the docs keep telling you there’s nothing wrong.) It is partially because of this horrid exercise that many lay folks in our circles take on a similar attitude. Lack of knowledge. Eventually they’ll get it, and you’ll know that it is because of you they have added to their storehouse of empathy and compassion.

  3. 03Arm yourself with knowledge. 

    We live in a culture where doctor knows best and their advice is followed as ‘word of God.’ This is a manageable way of operating if you have a cold or a flu or something that is acute and/or traumatic and can be fixed in a hospital OR. This is not the case with a chronic illness that has a high potential of killing you. Let’s face it, many of the diseases on the list of AI diseases, have that ability. General Practitioners are not familiar with the intricacies of our specific diseases. We are the ones who should know the most current treatment, the possible side effects of each drug, what it can’t mix with, the best time to take it for maximum efficacy with minimum side effects. We need to know that, and one day this knowledge might save your life. Acquire this knowledge during those times when you’re not completely knocked out by the disease activity or the treatment side effects, are lucid enough to retain information, and don’t have the energy to do much outside of your bed. Use those ‘not-completely-down’ days to arm yourself to the teeth with information.

  4. 04Research wisely. 

    Don’t forget that the internet is full of all kinds of scams and ulterior motives. This is why there has been such a strong aversion to patients looking up stuff on the internet in regards to their ailments. In my own doctor’s office there is a newspaper article, at least 5 years old, that quotes a study of how patients who researched their own disease had a decreased chance of survival than those who didn’t. It was based on a research sample of men over 50 with heart problems. The bias in that study is so apparent, I can’t believe it got published, but it’s there, in print so it must be true. They went out of their way to cut the article out and tape it to a door at the doctor’s office. This is the operating model with doctor’s offices yet the current expectation if we end up int he morgue is that we research our treatment. That was spoken to me on the phone by an investigator at the Edmonton Medical Examiner’s office after I spoke with him about a friend’s death that appeared to be from a drug interaction. So research wisely. Go to scientific journals, to accredited institutions specializing in Autoimmune Disease, like Mayo Clinic, Cleveland Clinic, and the support systems found within recognized charitable organizations in the disease that you’re dealing with.

  5. 05Find support in people going through the same thing. 

    Find a forum that discussing your disease. Choose wisely. There are some that focus a lot on the ‘suffering’ that goes with the disease and most discussions are a one-up-manship of symptoms. Find a place that discusses a wide range of topics on the disease; treatment, experiences and living as close to normal as possible during this experience. The wealth of information found on these forums is amazing. I feel truly blessed to have found the one for my disease, and our communal experience is unmatched for support, wisdom, compassion and kindness in times of utter despair. We feel like a family, and the group of us that were ‘in it’ at the same time, have become dear planet-wide friends. It’s like we went through boot camp together, I feel like they are family and would welcome them into my home anytime.

  6. 06Love each other. 

    Remember that your family and close friends are also going through a similar but different crappy experience.Don’t feel guilty but don’t forget that there is a helpless feeling in sitting on the sidelines, watching the one you love fight for life. Be kind to each other. When you start to feel angry, remind yourself that it’s probably the prednisone making things worse in your head than it really is. Being a female and having gone through that PMS experience where you can feel your mind taking a minor irritant and making it into a giant piss-off, I could recognized it, and could pull myself back out of the situation (most of the time.) Don’t forget to love each other and love yourself. Without the love and my family, I KNOW I wouldn’t be here today.

  7. 07Laugh as much as you can. 

    Try to laugh together, it changes the perspective and makes the passage of time go by way more pleasantly. There’s plenty to laugh about, just look at those pred cheeks and try smiling in the mirror. Now that’s funny. At least mine was – my lips nearly disappeared between the giant cheeks. Watch the way the new-post-chemo-hair (frizz) comes in looking a lot like a chia-pet. Funny. Truly.

  8. 08Be your own best advocate. 

    Armed with that knowledge that you’ve been acquiring, the support of a world-wide community that shares your experience, and the love and support of your family, you can go into the doctor’s office and have a serious discussion about your current treatment, possible alternatives and a real risk/benefit assessment. If you’re super keen you can keep all of your lab-work records from as early on in the game as possible. You can get your doctor to write a note to release them to you, and then you’ll be better able to gauge the big picture on how you feel vs your blood work vs your treatment protocol. This is where I went with my journey. Many might not want to get that involved, but absolutely know what you want to talk to your doctor about before going in. Write your questions down, bring someone in who can remember things for you or ask if you can record the visit on your phone so that you don’t miss or forget anything. Our memories suck at the best of times, the stress of a doctor’s visit eliminates pretty much everything but a few major points during recall. You need to get on that bull and ride it. This is your ride. Not the doctor who sees many patients each day and goes home to his family in the evening, he’s not dealing with the pains, the aches, the horrid side effects of the pills. It’s you. It’s YOUR ride. Own your ride. Don’t be your ride. Own it.

  9. 09Keep an eye on your spoons. 

    If you have an autoimmune disease, you’ve probably heard of the spoon theory. Here it is if you haven’t. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/Don’t try to be a hero too soon. Remember that when you are on the high doses of steroids, you get a false sense of strength and energy. Your body is in a serious battle and using up resources to deal with the chaos. You feel strong, but loose steam suddenly and drastically. This can also set your healing back in giant steps or worst case scenario, trigger a flare. Be smart, do it right from the start. (Science has shown that treatment efficacy decreases with each subsequent flare.)

  10. 10Find something bigger to focus your attention on once you’re out of the glue. 

    For many of us this is a life-long-ride, so when you’re out of the critical ‘glue’ stage, you will need to focus your energy on something bigger, something that makes your insides sparkle with joy. My life has changed irreversibly from this disease, and that use to make me a little angry, but it’s brought in so many other amazing things that would never have come had I not gotten sick. It has allowed me to spend my mental energy, and my scarce physical energy on something that is truly meaningful to me – to pay back all of those who supported me when I was down and who have supported me while I’ve been up. I want to make a positive change in and beyond this amazing circle of support I find myself in the middle of.

  11. It’s your choice, and you can always change it.Yoga

    To every single situation there is a good and a bad. They are often in different quantities, but there is always some of each. We are the ones who decide what we focus on. The good? The bad? The one that is evidently abundant? It’s your choice. We often see only one of immeasurable number of perspectives, and this is a conscious choice. Your observational perspective is yours and can be changed only by you. I got a lesson in this right off the bat. On my hospital visit which led to diagnosis, the ER doc overseeing me, gave me a diagnosis of secondary lung cancer and told me I should ‘start getting things in order,’ after a chest X-ray. I was dying according to him. The next day I got my own team of Internal Medicine docs (who got on my case after a first year med student who was shadowing the previous night, put my symptoms together and figured out what was going on alerting the teaching group he was in for Internal Medicine.) After a lung biopsy they told me I have an incurable life threatening autoimmune disease. I’ve seen it as a blessing ever since. An opportunity to do something that needs to be done. To love my people more, and to be loved back by them. My choice was imposed on me, but it’s given me the opportunity ever since then to be mindful of my feelings and where they are coming from and whether I can change my perspective. I will close this with a quote from an amazing lady who is in this with us and is a true warrior. It’s not her quote, but in my mind it will always be attached to her.
    “Pain is inevitable. Suffering is optional.”

  12. Celebrate the small victories every day and remember you can get to your destination just as surely in baby steps as you could in leaps.

Why

I don’t know if I’ve ever articulated the why of this whole thing. Why am I so insanely single minded about this whole ‘Find The Common Thread’ campaign?

Because I think we can solve so many problems and eliminate so much suffering if we change the focus of our query  and work together, both as patients, and also as physicians and researchers. That is to say that we all are seeking the same outcome, the understanding and ultimate elimination of disease. We need to work together because many of the perceived different diseases are related with immune system deficiency. Autoimmune Disease is an overactive immune response targeting various organs and/or systems. There are, as you’ve seen elsewhere on this blog, over 140 autoimmune disorders and diseases that affect 20% of the population. (https://findthecommonthread.com/list-of-ai-diseases-and-disorders/) Many of these disease patients go to very different specialists, from neurologists, to nephrologists, to cardiologists, to endocrinologist, rheumatologist, dermatologists, and on and on,  and their symptoms are dealt with according to their needs. Research tends to work in similar paths. But by working together we can do something great. By looking for the commonality in all of our diseases we can find an answer for all of them. By changing our focus from inside the silo of our individual diseases and looking at it from a single disease perspective, we can save lives, we can improve economy by keeping a large percentage of the population, healthy, happy and productive, and we can save billions in health care costs, allowing for extra research and patient care.

But wait. If we get an understanding of how our immune system works from the combination of knowledge and research towards that goal, we will at worst, save 20% of the population in those who have autoimmune disease. By understanding our immune system, we will get a much better handle on cancer which is deficient immune response on the other side of the spectrum. In autoimmune the immune response turns on its own body “self”, and cancer is an immune response that is not attacking the “other” cells that are attacking its body. We will also get a better handle on infectious diseases and help those patients. AIDS research would benefit greatly from a more detailed map of the workings of the immune system.

There will be stumbling blocks along the way but if there’s a will, there will be a way. For us to really be successful we will need to all take the high road and work together toward finding a cure. And when we work together I don’t think that something as insanely big as the idea of not only finding a cure for one disease but finding a cure for all of them at once doesn’t sound so crazy. If we truly work together we can truly do something great and save 1 in 5 people from pain, suffering and an early death,  with one swell swoop, possibly even more.

So I challenge any organization that is looking for a cure for autoimmune disease (or any of the others for that matter) to jump on board and have a Pajama Day Event in your area on February 28, 2014. Only together can we pull this off. But it can be pulled off.

Your imagination is your only limitation to an opportunity to unite all autoimmune disease groups for one day and change the perspective from which we can look for a real cure, rather than more ways to deal with symptoms. Everyone of you gets that point alone. We see treatments come and go that are wrapped in a bow that says ‘cure’ on it, but ultimately how can you find a cure when we don’t really understand what the problem is. We can only understand the true scope of the problem by sharing notes and working together.

Together

one in five
one in five

Well, here we are… standing on the edge. These are the first steps to what I hope to become something we can all be proud of one day. I have gone (both mentally and physically) from a significantly small group of Weggies (those special folks sportin’ Wegener’s Granulomatosis, an autoimmune disease affecting the small blood vesels of the body) to one of the largest common group of sufferers from a disease out there – autoimmunity. From a group of one in 30 to 40,000 to a group of 1 in 5. So why isn’t the world standing up and doing something about it? Well, I guess that means it’s up to us.  1 in 5, that’s a lot of us.

First on the agenda, lets wake everyone up to our existence and our strength in numbers. We’ll start with ‘Find the Common Thread Pajama Day’. Ever wanted to wear your PJ’s at work? Well here’s your chance. Talk to your bosses, encourage them to support the movement. Guaranteed they know someone with an autoimmune disorder. Guaranteed. The list of individual diseases that falls under the AI umbrella is longer than your arm. Try having challenges between offices or like businesses to see who can have more PJ’s show up at work, host PJ parties, have PJ fashion shows.

 This year we’ll do it on Rare Disease Day, February 29th 2012 because so many of the individual diseasses fall under ‘Rare Disease’ category, and when the world starts to see us for the mass that we really are we can move it to March 1st in the following years. We’ll wear our PJ’s because so many of us spend days ‘looking normal’ while our bodies are waging a war inside in the privacy of themselves/ourselves. Self against self. Not of our choosing.

Once awareness is out there we can start raising money that will go towards research to help find the common thread.
Only together can we pull this off.