If the last nine years have taught me anything, it is that people respond to the health issues of others in a variety of different ways. A prolonged illness or sudden medical crisis often brings out the best in people, from cooking meals and helping out with groceries, to giving hugs and providing support, or lending an ear to listen to someone work through their emotions or difficulties making a serious choice regarding treatment, to something as simple as taking someone out for coffee to distract them or sending a card in the mail or a friendly email. Sometimes, however, peoples responses are unwanted, unhelpful, or even outright mean. Anyone who has been ill for a long period of time can, if asked, likely list of some of the most hurtful or discouraging things that family, friends, and even complete strangers have told them. I find that the majority of people really actually do want to help or provide words of comfort and support. Often times, however, their efforts are shaped by fears about their own health and mortality, feelings of not knowing what to say, or simply not grasping the situation/implications of the medical diagnosis. I firmly believe that people approach each other and medical issues with good intentions, but I, like many others with chronic illnesses, have experienced a host of comments that were meant to help, encourage, support, etc., but just came out as hurtful and discouraging.
Like many others who have posted online about this topic, I have had people tell me similar things. Here are seven that stick out to me.
1. This first one seems like it is rare but is more common than you would think. In my opinion, i is probably the worst thing you could ever say to someone who is chronically ill... or facing any type of medical issue for that matter - At least it's not cancer
I don't even know where to begin to explain how painful a comment like this is. Not only does it negate my own diagnosis and everything I am going through, but it also makes me feel guilty for being ill to begin with. This statement likely stems from the age adage "it could always be worse". It is meant to draw a person's attention away from the negative aspects of their diagnosis and towards the positive, brighter side of life, but what it tells the sick person is "I hear what you are saying but it is irrelevant because you don't have (fill in blank with some worse medical problem). The thing is, regardless of whether or not other people have more severe medical problems than I do, I am still afraid, in pain, and facing more surgery, months of antibiotics and probably physical therapy, and I have to put my life on hold, again, this time for eight months. People having it worse than me does not mean my situation does not suck or suck any less than it I think it does. I try really hard to look at my bone infection is perspective to everything else in the world, but sometimes, especially after the relapse, it is kind of hard to do. Despite trying to be brave and strong through everything, I need comfort and validation for my feelings too.
2. "Oh, you have to be on crutches for five month to recover from surgery? I once sprained my ankle and had to use crutches for a week! I can totally relate to how much it sucks."
Really? REALLY? *deep breath* When I first broke my leg I had to use crutches for ten months. I was on them for so long that I pinched nerves in my hands and couldn't feel my thumbs anymore. My palms were covered in calluses. I got blisters under my armpits - blisters that wouldn't heal because every time I used my crutches to go to the bathroom they would break open the healing skin. I get to look forward to this again when I have surgery in the fall. A week does not compare to what awaits me. People say things like this because people feel better when they can relate what other people are going through to their own experiences. Sometimes, though, it is better to simply listen than start talking about yourself.
3. "You look so good today! How can you be sick and look so good?"
First, are you telling me that I usually don't look good? Ouch!
Second, I have a bone infection... in my tibia. Unless the infection has worked itself up to my head and burrowed deep into my brain overnight, which my doctors have assured me will not happen, it has not impacted my ability to pick out nice clothing or put on that bright red lipstick that makes me look awake and energetic.
This is meant as a complement, but people who are ill do not always hear it that way. It might be more helpful to say "Nice lipstick!" "Is that a new scarf? It's really pretty" or something else along those line.
Furthermore, sometimes the bad things happening within us are not visible on the outside. At the moment, nobody would know something is wrong with my if they did not see my MRI, CT scan, bone scan, or x rays.
4. "You are ill because god knows you are strong enough to deal with it. He never gives us more than we can handle."
I never know if this is a complement or not. I am always left wondering "Thanks, I guess... do you mean that I should take being ill as a sign that I am more courageous, strong, etc. than people who are not ill? Or that people are healthy because they are weak? Or that I should be happy with god for making me ill?"
Also, I might appear strong, but that is not because I am strong, but because I have know choice to put my game face on in order to get through this. Anyone else in a similar situation would do the same. It has nothing do with being strong and everything to do with surviving.
Aside from all that, my relationship with god, if I have one, is my own business. I find it much more meaningful when people tell me they are praying for me. Doing so allows them to feel like that are doing something for me, shows me that they care about me, and doesn't put me on the spot to respond in a way that doesn't offend them religiously.
5. This one is similar to number four: "God does everything for a reason!"
Does he now? I don't even know how to respond to this one. I usually just nod and smile. What reason could god possibly have for making me, and countless other people, suffer. This statement makes the least sense when people face a potentially fatal disease - if a person lives, it is so that they learn something from being ill, and if they die, their purpose was to inspire and teach others. This statement denies a person's need to question why they are ill, explore their actual purpose in life, and come to terms with their feelings. It doesn't matter that Bobby Joe is angry about being ill because god made him ill for a reason.
6. Usually enthusiastically spoken: "I wish is could take naps too!" Or take time off school/work, do less work around the house.
I nape because I need to nap, not because I want to. I can honestly say that I would much rather be riding my bicycle or reading a good book then sleeping time away. Taking a nap might seem like a fun, but only until you rely on sleeping ten plus hours a night and then needing several hours more sleep after work/school before having energy to do anything else. I used to love naps, just like you! Not so much anymore.
7. "My sister's aunt's boyfriend had that. He did (blank) and now he is cured!"
This most often included alternative medicine like reiki, herbal supplements (last fall a woman gave me a small bag of unidentified seeds to put in my tea to heal me... I politely accepted but did not use them), or hyperbaric oxygen therapy. I assure you, these things won't help me. I am getting counseling to deal with the relapse and doing breathing exercises and guided imagery to relieve stress. I am also looking into doing yoga. These things are all complementary to the treatment my ID specialist and orthopedic surgery recommend (antibiotics, debridement, and bone graft).
The worst is when someone tells me they once new someone who had an acute bone infection that went away after a month of oral antibiotics. Trust me, I have been there, done that - fifteen months worth - didn't work. An acute bone infection is much easier to treat than chronic osteomyelitis. I am in this for the long haul, and hearing about someone who easily beat a bone infection is no encouraging, especially not since it has come back.
These are seven things that people have said to me that were well intended but ultimately hurtful and not helpful.If you have a friend/relative/coworker/etc., who is facing a medical crisis, the best thing you can do is ask them what they need or how yo can help. Be there if they need someone to talk to. Maybe take them out to coffee, send a card or some flowers. Most of the time, just knowing that someone is thinking of you is the best thing a person can receive - not un-asked for advice or motivational pep talks.
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