For most of us, we suffer in silence and invisibility 24/7, so it’s nice every now and then to be able to vent and feel like our loved ones care and understand what we go through (to the best of their abilities anyways). Please know you will not offend us by simply asking about our diagnoses, symptoms or pain, even if you might have forgotten or if we’ve told you many times before! Chronic illnesses and pain are very complex and individual, and therefore involve many layers. We appreciate that you care, and simply allowing us to educate you about our medical journeys makes us feel better, more validated and ultimately loved! Bonus points if you actually read articles and links we send to you in an effort to further educate yourselves!
There is one thing I know for sure about living with chronic illnesses and pain and that is…I could not do it without supportive family and friends in my life! These are the people who have been there for me throughout my medical journey, and have held me down and helped keep me sane! It takes a village to manage the roller coaster of pain and symptoms, and this article is comprised of seven things I want my loved ones to know that just might make it easier!
1) All Chronic Pain is NOT created equal!
With my medical situation, I suffer with multiple chronic illnesses that cause chronic pain, including CRPS/RSD (full body/systemic), fibromyalgia, degenerative disk disease (lower back & neck, sciatica (right leg), migraines and kidney stones, among other chronic issues. The pain experienced is different for each illness and therefore requires different treatments and coping mechanisms.
For example, CRPS/RSD, which is rated the most painful of all chronic pain syndromes (according to the McGill Pain Scale), feels like I am simmering and seething in a campfire 24/7 while someone takes a blowtorch to my body! There is a reason it is called “the suicide disease.” On the other hand, fibromyalgia feels like I’ve been run over by a truck with my muscles deeply aching as though I’ve worked out and run a marathon for a year straight!
Each illness has its own set of symptoms and challenges. Each patient with chronic pain is different, so just knowing one person with chronic illnesses and pain and what he/she experiences doesn’t mean you know what ALL people go through, particularly if they have multiple types of chronic illnesses and pain! It’s never good to assume that if a specific medication or treatment worked for one person with chronic pain it will work for your loved one for example. The best thing to do is just ask us!
2) Please ask us to explain our pain/symptoms!
Generally speaking, the longer we have suffered with chronic illnesses and pain, the less we talk about it. Why? Because we have learned that it can sometimes make those around us feel uncomfortable, the same way death or other negative experiences make people uncomfortable. And who wants to be around people who make you feel uncomfortable, right? We also don’t like to feel pitied, be a burden or have people feel sorry for us. But even though we may not bring it up, we WANT you to understand our plight - as difficult as it might be to comprehend - because it affects every part of our daily lives. My rule of thumb with most of my friends and family is to NOT mention my medical situation unless they bring it up, and then I usually give the caveat that I am comfortable talking about it as much or as little as they want!
3) Just because we suffer with chronic pain doesn’t mean we don’t want to hear about your pain!
If I could have a $1 everytime I have heard the words, “I can’t complain about my pain to you because it doesn’t even compare…” I would be rich! LOL. Our loved ones may have a tendency to hold back how they’re feeling (good or bad), or not tell us when they’re sick or in pain because they feel they don’t want to burden us with “minimal issues in comparison” or on the contrary “rub fun things we cannot do in our faces!” This couldn’t be further from the truth! In all actuality, we want to hear about the good and bad in your lives, whether physical or emotional!
Pain isn’t a competition, and just because we suffer with chronic pain doesn’t mean the pain you suffer is any less real or life-altering for you! And we certainly don’t want to feel left out of important things going on in your lives, especially when you’re hurting OR happy. In fact, many times it takes our minds off our own issues and pain! We WANT to be there for you the same way you have been there for us, regardless of what it is. So please don’t think that just because we suffer, that your suffering OR elation is unwelcome information.
4) We may look perfectly healthy…but we’re not!
Just because we may look “healthy” or “normal” to you doesn’t mean we aren’t suffering! So many chronic illnesses and pain are INVISIBLE. As a society, we are used to seeing people in pain in the media, movies/TV, (etc.) being portrayed by an ER visit, screaming, crying, cursing, writhing, bent over and rolling around or in a fetal position. More often than not, this is representative of people in ACUTE pain which is short term pain. Additionally, many times the belief is that people with pain are in wheelchairs, can’t walk, use canes and the like. That is true for some of us, but for many of us who suffer with chronic pain (or pain lasting longer than three months), this is not necessarily the reality.
Don’t get me wrong, we definitely have moments where we express in these ways, but we usually don’t let people see it. When we are around our loved ones and the public, generally we wear our “chronic pain warrior masks” for the greater good - just to fit in and make people feel more comfortable around us so they will invite us to be around them!
Additionally, when we live with pain/symptoms 24/7, if we lived our lives reacting to it by constantly screaming, wincing, cussing, etc. we would wear ourselves out even further and cause even more physical stress and therefore more pain/symptoms! We have to find SOME way of living with chronic illnesses and pain, and for many of us it helps to be quiet and meditate or focus on something else besides the suffering in order to distract ourselves from it. Just because we smile or look pretty does not mean our pain is magically gone!
5) Please invite us even if we can’t go!
Yes, it’s a fact that because of our chronic illnesses and pain we may not be able to do many things we used to be able to do or want to do. Or we may have to cancel at the last minute because our pain/symptoms are just not having it that day. I’ve actually found out more times than I can count that I wasn’t invited to something, “because we knew you wouldn’t be able to do it.” I’m not crying, are you crying?! Because of these issues, sometimes our loved ones might not invite us to do much after a while, which can contribute to the isolation and loneliness we already feel living with chronic illnesses and pain.
Additionally, just because we may not have been able to do a certain activity one day, doesn’t mean we can’t do it another day! Maybe we were having a flare when you did the activity last time and now we are feeling better? On top of this, it’s possible we can make arrangements to go a portion of the time or take multiple accommodations with us to make it more feasible for us to go.
The point is, WE DON’T WANT TO FEEL LEFT OUT! All you have to do is shoot us a simple text to say, “we’re doing XYZ and you may not be able to go, but I wanted to make sure you were invited.” (Heart full) Many times we will decline because the LAST thing we want to be is a burden or slow the group down on account of our medical issues. But I promise it will make a WORLD of difference for our morale and confidence to simply feel included, as so much of living with chronic illnesses and pain robs us of precious life experiences and memories.
6) We appreciate it when you check on us!
Since living with chronic illnesses and pain is a 24/7 chore, and often times invisible, many times our loved ones forget we are suffering day in and day out. As time goes on and years (and decades) go by, we may find better treatments and learn better ways of coping with our illnesses, but this doesn’t mean we still aren’t suffering. It is a nice gesture to ask us how we are doing, validate our symptoms/pain, or simply make supportive comments such as:
-“I’m so proud of the way you’re handling your illness.”
-“I know you are going through a lot on a daily basis but you deal with it very well!”
-“You’re so strong to cope with your intense medical issues everyday.”
-”What can I do to make your life easier?”
-“I know you feel bad but you sure look beautiful!”
-“I just want you to know I’m impressed with the way you manage your pain.”
-“I know you are always hurting, and just wanted you to know I’m always here to support you.”
-“How did your last doc appt go? Any new treatments you’re doing?”
7) We appreciate it when you take our medical needs into consideration!
This one is huge and very relevant, especially because it’s necessary most around the holidays! Because our chronic illnesses and pain exhaust us merely from the physical stress on our bodies 24/7, one of the biggest strategies we use to counteract this is pacing. Pacing refers to spacing out your activities so you’re able to stay within the limits of what your body can handle without exacerbating your pain/symptoms.
Before any activity or task, most of us need to prepare beforehand and recuperate afterwards. For me personally, I can only be “engaged” for appx 2-3 hours max before my pain/symptoms start knocking LOUDLY on the door for me to rest - “rest” meaning to “disengage,” lie down, have silence, no conversation, no people around, focusing on tv/music, my heating pad and pain spray on, take medication, etc., etc. If I don’t listen to my body and end up overdoing it, the repercussions can be bad, causing flares or extended need for rest/recuperation.
Usually holidays are the most stressful for us. They are loud and hectic. And LONG. For many of us, taking our needs into consideration means we may not be able to be present at the holiday celebration for the entire time. Or, we may not be able to cook anything or stop by the store beforehand because we may need to save all our “spoons” for the holiday get-together. For others, it may mean we need a comfortable spot to rest while everyone is socializing.
Other examples of needs are the following:
-Temperature control (for example I am VERY sensitive to heat so if someone hosting an event has the heat cranked up I will need a fan)
-Worse/better time of day for activities
-Sound/chemical sensitivities (for example having a designated play room for small children can help, as can asking guests not to wear perfume/lotions)
-Driving or driving long distances
The list goes on! Everyone is different - an easy question to ask when you’re going to be with (or host) someone with a chronic illness/pain is, “What can I/we do to better accommodate your pain/symptoms and make you more comfortable?“
In the end, we all just want to be loved, validated and supported despite our chronic illnesses and pain, same as everyone else. We were just dealt a crappy hand of cards in health, but this doesn’t mean it defines our lives. Thank you to all the supportive family, caregivers, spouses and friends who continue to go on this medical journey towards wellness with us. Happy Holidays!