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.
- No 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.
- Don’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.
- Arm 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.
- Research 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.
- Find 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.
- Love 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.
- Laugh 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.
- Be 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.
- Keep 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.)
- Find 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.
- It’s your choice, and you can always change it.
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.”
- 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.