Unfortunately for most of us, there is no guidebook on how to cope handed out along with our chronic illness diagnosis’; it’s more of a learn as you go type of experience. Life will likely become a lot of trial and error, not only when it comes to which treatments work for you, but also when it comes to figuring out how to live with your illness. You will learn from your own experiences, as well as those of others. Some of the best advice I have gotten in my journey has come from the “what not to do’s” of other chronic illness fighters. So here are a few of the mistakes I’ve made a long the way, in the hopes that you won’t have to repeat them:
(1) Not taking my diagnosis seriously.
Both when I was wrongly diagnosed (if you missed that saga, you can read all about it in Part 2 of “My Story”) and for a time after my actual lupus diagnosis, I chose to ignore the severity of my symptoms/illness. I can list off numerous examples of how I willfully ignored what was happening in my body, including: shoveling a little less than a foot of wet snow when my fingers were so swollen I couldn’t fit them into my gloves/had to stop every second or third shovel-full because the chest pain was too bad and I had been dealing with a bout of pericarditis for the past few days, or the time I refused to go to the hospital when I had been home for half a week with body aches, sweats, a 105 degree fever and not able to keep solids or fluid down (turns out I had a kidney infection, but I still fought being admitted to the hospital!). The bottom line is, it is serious – especially when you don’t take proper care of yourself.
(2) When I felt good, I stopped taking my medications.
This seems insanely stupid when I say it out loud, but I did have periods when, for whatever reason, I just didn’t take my medicine. I would sometimes get to a point where I felt good for a while and then I’d start skipping doses and not really stress about it. I paid for it, dearly, in the form of serious disease progression and some really shitty days of flare-ups.
(3) Not listening to my body.
When I am able to stay mindful throughout the day, rather than constantly pushing myself and speeding through life, I can feel the warnings from my body that I need a break or that my body is gearing up for a flare. I love a good body scan meditation to help me with this; it helps me to really tune into my body and see where I may be holding tension/where exactly my pain is coming from and just generally how I’m feeling. When I was trying to push my body and will it to accommodate the fast paced life I was used to, I would be able to go, go, go and fight through for a few days, but then I’d wake up one morning feeling like I was hit by a freight train, unable to get out of bed and have no idea why! Well the reason was because I didn’t pay attention when the fatigue started to set in (the body’s warning sign), followed by the joint swelling (yet another warning sign), followed by the brain fog (and another warning sign), followed by the body aches (the most obvious warning sign). The key is to take a few minutes and tune into your body… Check in with yourself frequently and see how you are feeling in that moment. And if your body needs rest…rest!
(4) Pushing through the pain.
This is a big one. There were so many times when I could feel my joints starting to swell and my fatigue starting to really kick in, and I would push myself for that extra hour (or 3) until I couldn’t see straight. You may be able to get those extra few hours in at the office today, but in the end, the pain you will suffer really isn’t worth it!
(5) Feeling ashamed.
I still struggle with this to some degree. When I got sick I made the decision that I did not want others to know. I told my parents that I didn’t want her talking to anyone about it, I didn’t tell many friends, let alone ANYONE from work. I felt that people’s opinions of me would change, I would no longer be the strong person who could handle whatever was thrown at her – they’d see me as weak and less than. I didn’t want people’s pity. I made assumptions about how others would see me based off of how I, subconsciously, saw myself. When my boyfriend and I split up, I thought that was it, I would be alone forever because who’s going to want to take on that kind of baggage!? Who wants to be with the damaged sick girl? I defined myself by my illness and assumed that everyone else would too. What a waste of energy!
(6) Compared my life now to my life before getting sick.
Before getting sick, I could work 10-12 hour days and still go out after work; I’d be ready for bed when I got home, but nothing near the level of fatigue and pain that I wake up with in my body on a good day now. So after getting sick, I would constantly compare my level of performance or energy now to my level of performance before getting sick. In social psychology, this is referred to as upward comparison, and there is no benefit to it; as a matter of fact, it leads to depression/decreased self-esteem/etc. The truth is, there is no comparison! We are not the people we were before getting sick, so why do we judge ourselves like we are?
(7) Refusing to accept or ask for help.
It is so important to have a strong tribe of friends/family and to be willing to ask for help when you need it. Whether it’s driving you to a treatment, bringing you chicken soup when you’re too sick to cook for yourself, picking up around the house for you every once in awhile, or shoveling your driveway! It’s ok to not be perfect and it’s ok to not get everything done by yourself.
(8) Not being my own advocate.
This is so important, it really should be number one on this list! I stuck with a doctor for 3 years even though I knew he was not listening to me or my symptoms. I knew there was something very wrong going on in my body, even if he refused to acknowledge it. Doctors have fancy degrees, and that’s great, but you know your body and what you’re feeling better than anyone. You know when something is not right and with the amount of information at our fingertips nowadays – through the Internet – there’s no excuse for not being a well-informed patient! I now treat initial appointments with doctors like an interview, and if I don’t feel like I’m being heard or a doctor is a right fit for me, I simply leave and find someone else who is. NEVER stay with a doctor who makes you feel like you’re not being listened to and taken seriously.
(9) Setting hopes for recovery too high.
I think everyone goes through this early on in their chronic illness journey. My goal was to find a miracle pill (or pills) that was going to CURE me. I understood that I’d likely always have to take it, but it was (in my mind) essentially going to eradicate all these obnoxious symptoms so I could get back to my life. Probably a year into playing with treatment combinations for my fibromyalgia, I was sitting in my PCP’s office complaining about my pain/fatigue and she said to me, “Look, you have to accept that you are NEVER going to be completely pain-free and you will always live with some degree of fatigue no matter how heavily we medicate you. The goal is to get everything to a manageable level, but you’re setting your hopes too high for what a pill is going to do for you.” I was speechless, but I needed to hear it.
(10) Not exploring alternative/complementary treatment.
When I was first diagnosed, I was willing to try any and every prescription drug anyone would throw my way if it would stop the lupus flares, I was desperate for relief. But, the truth is, prescription meds are not the only options for relief out there and they are all worth exploring. I choose to have a mix of traditional lupus and fibromyalgia treatment and complementary medicine (yoga, massage, acupuncture and a variety of other things). I have done a lot of research and I determined that this was the best fit for my life. That being said, I am not a medical professional and all courses of treatment should be discussed with your doctors. My only point is, you have options!