When Chronic Illness Puts You at the Mercy of Others
For those of us who have been bitten by the “chronic disease” bug (pun intended), you are well aware of everything I am going to say.
This is for everyone else…
I have had many beautiful people support me from afar during my journey; cheering me on via my Facebook wall, “liking” my statuses every time I had a major update during my treatment and sometimes “sharing” my GoFundMe page. Don’t get me wrong, any support I can get I will gladly accept with open arms and roll around in it because this chronic world can be so lonely – but it’s the very few people who support me up close that make or break me.
The reality of living with a chronic, invisible illness is that no matter who you are or what disease you possess, you are at the mercy of anyone who believes you. This may sound strange at first, but I assure you it is a very real and very unfortunate reality.
The doctor that I go to, an LLMD whom I will refrain from naming, has a front desk staff that is less than pleasant, to put it nicely. Every time I am standing at the desk I am greeted by an irritable employee with a God complex. This person is in charge of making sure I can get my schedule straight with appointments/treatment protocol, giving me my allotment of supplements and returning my phone calls (whenever they feel like it). They have given me a problem every single time I have interacted with them. I have been mistreated on countless occasions and even the people that are kind enough to sit in the waiting room with me have commented on the negative nature in which I am being treated. Do I say anything to anyone? Of course not. Why? Because this office is the only one that will treat me. This office is the only one that has not told me I was “crazy” for feeling the way I do. This office has me at their mercy because I cannot afford to hunt for another doctor who will take me seriously.
My friends are amazing. Our group text is always blowing up with exciting news, plans for hangouts and the usual college agenda so I feel relatively in-the-loop even though I’m homebound. That being said, they can also hurt my feelings. I don’t hold it against them for not inviting me places because the obvious will tell them that I cannot attend due to my illness – not that I wouldn’t highly appreciate being asked anyway. Only one person in this group will visit semi-regularly and when they do, they are usually on their phone the entire time texting their significant other, playing games or browsing Instagram. I am very grateful that they came over but I wish they wouldn’t look like they would rather be anywhere else other than sitting with me.
On occasion other members will stop by in groups of two or more but they won’t stay for more than 20-30 minutes and won’t offer to help me do anything (suffice to say the typical “if you ever need anything” comment that they will never follow through with). They often make comments about maybe stopping by when “everyone else is busy” or offering to do things with me that they know I will never be able to do so they aren’t tied down (go drinking, dancing, etc.). Can I complain? Can I afford to tell them how I feel? Not really. Without them, I have zero human contact during the day. I live alone and I’m always afraid if I rock the boat in any way I will lose the already very minimal human interaction I get. I am at the mercy of whatever quality of friendship I can get.
My point is if you care about someone who has a chronic illness, check yourself every now and again. They may literally be at your mercy. Think of the phrase “don’t bite the hand that feeds you” and imagine you are the hand. Oftentimes they cannot drive or they might use a wheelchair and do not get the opportunity to leave the house much, so you are the only way to a life outside those walls. If you have some free time to visit, leave your phone in your bag or car and engage the person if they are up for it. If you have nothing to do, make a plan with them to get some fresh air. Above all, don’t hold it against them if they cancel last minute because believe me, that is the very last thing they want to do. As someone who relies on everyone around her to get out of the house, I relish any opportunity I have to do so and will plan days in advance to rest up in an attempt to have the energy for it.
Make Uncle Jesse proud and “have mercy.”
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Thinkstock photo via Tharakorn.