Ever since I became chronically ill over five years ago, I thought there was an unspoken rule in the chronic illness community: When another chronic pain or chronic illness warrior tells you something about the severity of their symptoms, you took that statement at face value; you believed them.
I recently had a conversation with a chronic pain friend whom I’ll refer to as “Jean.” Jean made a surprisingly calloused comment about another young woman she knew who was terminally ill. I’ll call this terminally ill woman, “Mandy.”
My friend Jean remarked of Mandy’s condition, “I really don’t think Mandy’s health situation is as bad as she makes it out to be. I think Mandy is just trying to milk her situation for the attention.”
Jean’s comment both shocked and deeply bothered me. Mandy was on hospice care, and in her final stretch of life with cystic fibrosis. Whatever Mandy had told Jean about her health problems, she had likely done in hopes of receiving some kind of support and validation. And not only that, I highly doubt Mandy had exaggerated any of it. She was terminally ill, for crying out loud!
I was absolutely stunned by Jean’s comment. Not only is Jean a chronic pain patient herself, but she has been spending months in the middle of litigation because of a terrible traffic accident that caused her chronic pain, has been going to counseling, numerous doctor appointments and fighting for pain medication, among other vexing vicissitudes.
If someone has been put on hospice care and is in the final stages of their terminal illness, chances are, it is as bad as they say it is. And not only that, but how often have we, who are chronically ill and chronically in pain, hoped against hope that our doctors, family members and friends will believe us about our unfavorable health situations and take what we say at face value? Can we not extend that same courtesy to other chronic pain patients and chronic illness warriors? If we can’t have each others’ backs in the chronic illness world, how can we then have hope that others will have our backs? At the very least, we can keep our mouths shut instead of opening them up to discount someone else’s problems and pain.
There is a saying that goes something to the tune of, “What you say about others says a lot about you.” Doesn’t judging and nitpicking also cost us precious energy anyway? Energy most of us have little to begin with, I might add. Why would we waste it on trying to determine whether or not Mandy is as sick as she says she is?
If we aren’t believing our fellow warriors’ health situations, then we are also compromising the very delicate fabric of faith we are working very hard to first establish and then strengthen with the medical community. This includes the current opioid crisis and how it has affected our treatment both medicinally and on a doctor-patient relationship level, which for me, has been a disrespectful and condescending one from a great many medical “professionals” who have frequently behaved in a manner that has been anything but professional.
I know for a fact that other healthy individuals have not believed what I have said about my health problems because they have told me as much. I have had doctors tell me my pain, malaise, stiffness, migraines and nausea are likely all in my head and have even outright asked me if I’m just in their office seeking drugs. Family members tell me I look like the picture of health. (That’s wonderful.) Friends have asked me if my pain is really all that bad. (Slap in the face.) Another family member asked if I was taking something that was causing me all of this horrible pain and malaise (eye roll and facepalm). Seriously? Why would I do that to myself?!
Perhaps all of these people mean well, but each and every one of those comments have stung and infuriated me. What we want and need is for other people to take what we say about our health problems at face value. And if we want and hope for that level of respect from our friends, family members, and medical professionals, then we as chronic illness warriors need to be able to provide that same level of respect and courtesy to others – especially those who are within the chronic illness and chronic pain community. We need to have each others’ backs.
Do we need to leave unkind comments on articles that we don’t agree with? Perhaps if you don’t care for an article or a particular comment, then it’s OK to move on without starting an all-out war. There’s no need to be an internet troll. If you feel it absolutely necessary, it’s possible to lend a new perspective without ripping your fellow warrior an additional rectal canal. New ideas and perspectives can be offered with tact. After all, “You can catch more flies with honey than you can with vinegar,” as my grandma always used to tell me.
Why are we launching artillery at people who are already in the throes of the most treacherous rapids of their lives? Can we toss a life-preserving comment of kindness instead? Or float notes of encouragement in a bottle from ashore toward those in need? Maybe take some freshly picked flowers from your yard and put them in a small vase or cup of water and take them over to let your fellow warrior friend know you’re thinking about them.
I have another very kind and thoughtful fellow warrior; we exchange care packages with each other every now and then. The packages she sends to me always seem to show up at the right time, when things are dark and rough and I really need a boost. They contain brightly wrapped goodies, notes of encouragement and things she knows that are soothing and special to me. Find someone you can look out for and maybe they’ll look out for you, too. Besides, it’s hard to lift someone else up without you also being lifted up and without having your own mood improve.
Not being believed or having others insinuate you are faking it or milking it when you have a chronic illness or live with relentless, crushing amounts of pain is one of the reasons some people get to the point where they feel like their lives just aren’t worth living anymore. It’s bad enough to live with staggering levels of physical pain, fatigue, and illness, but to have people accuse you of also being a liar amid all of that hell? Is that the direction we want to be herding people?
Even if a person truly was faking it or even milking their affliction to some extent, if you were to give them a helping hand instead of a ruthless backhand, you would be the better person at the end of the day for having taken the higher road. And I can tell you from personal experience, if anything, I play my symptoms down quite a bit just to make others around me feel more comfortable. Most people just don’t know how much pain and suffering I am in. And I have other chronic pain pals who have also admitted to significantly downplaying their symptoms for the sake of making others feel more comfortable. They don’t milk their situation or symptoms. Should we also have to be on pins and needles around our fellow illness and pain warriors? Shouldn’t we at least be allowed to truly be ourselves around “our own kind” without the risk of finger-pointing and harsh judgments? Aren’t our day-to-day pains and problems enough?
I don’t think most of us are guilty of invalidating our fellow warriors, but as a gentle reminder, please, give people the benefit of the doubt. Choose to believe others when they tell you how sick they are or how much pain they are in and have compassion for them. Some people really do know how to hide their afflictions well. A chronically ill person does not need one more stone thrown at them by yet another person’s disbelief regarding their health situation, especially not from another member of the chronic illness community. Don’t add another stone to their already-burdensome pack by telling others you think they are stretching the truth or they are making it all up. Be willing to listen to them verbally offload some of their baggage or offer a helping hand. It doesn’t take much to lighten the load of another. If nothing else, just believe them.