Sunday, June 25, 2017

Not a Drag


Note: This piece was originally written in response to the following writing challenge, offered by The Mighty: 

We often read comments in our community about people worrying their condition will prevent them from being in a relationship or finding love, even if that’s not truly the case. What would you say to someone else with your or a loved one’s diagnosis who also feels this way?


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Back in college, I dated the wrong boy for far too long.  He seemed to feed off of every insecurity I had, and even gave me some new ones.  While I’ve mostly overcome all that and rarely give him a second thought, there’s one thing he said that has stuck with me all this time.  One thing that has become my greatest fear, my greatest insecurity.

You’re such a drag, always sick all the time.”

As a (then) English major and (later) English teacher, I focused in on that language.  He didn’t say that it’s such a drag that I’m sick all the time.  He specifically put the negative, the blame, the drag on me.  As if I could help it.  I wasn’t deserving of patience or sympathy because I was suffering; I was made to feel worse because it was bringing him down.  I was the problem.  And that was before I’d even developed the chronic illnesses I now have.  Eventually, I realized that he was not good for me (for at least 100 other reasons), and got rid of that boyfriend … but his words remained buried deep within.

Once I’d gotten rid of him, I renewed a friendship with an old boyfriend who would eventually become my husband.  My kind, caring, supportive husband.  He’d been a friend since childhood, and seen me through the highs and lows of all aspects of life … so I always knew I could count on him to be there when I needed.  Still, when I started to get really sick, my ex’s words haunted me again.

My insecurities came flooding back, made worse by the fact that I didn’t have a diagnosis; in fact, I couldn’t even get a doctor to take me seriously for years.  I just felt worse and worse, with pain, fatigue, and weakness that forced me to cancel plans and miss experiences, and no real explanation.  Surely my husband must think I’m a drag.

As these symptoms continued, I just didn’t feel like myself anymore, and it showed.  I wasn’t the vibrant, bubbly, perky person that I’d always been, because I was too weak or in too much pain.  Surely my friends must think I’m a drag.

Since I could never control when my symptoms flared and when they were bearable, I had to stay home on several holidays and special occasions ... and sometimes my husband stayed home to take care of me.  Surely our families must think I’m a drag.

I had to take so many sick days, and often scheduled medical appointments during my lunch hour instead of eating in the break room with everyone else.  Surely my coworkers must think I’m a drag.

As time went on and my symptoms got worse, I was eventually diagnosed with Fibromyalgia and Sarcoidosis – neither of which has a cure.   I realized that my life would never be the same – I would never be the same.  As I thought about all the things I could no longer do, the places I could no longer go, the adventures I could no longer have, my ex-boyfriend’s words filled me with more sorrow than the illness itself.  Surely my husband must think I’m a drag.

Now the reality is that was all in my head, not theirs.  Don’t get me wrong – I’m sure my husband, friends, family, and coworkers were at times frustrated or saddened when I wasn’t able to be there for the big events.   They may have even thought it was “a drag” when I couldn’t do the little ones.  But that word choice is important.  They were (and will continue to be) disappointed in the situation – the fact that I have to miss things because of my illnesses – and not in me as a person/friend/relative.  They don’t blame me for being sick.

In all honesty, there have been people who didn’t believe my illness was real, who thought I was exaggerating, making excuses, or just looking for attention.  There are people who have faded out of my life because they could not – or would not – adapt (see my recent piece, The 5 People).  But what’s important to keep in mind is the quality of these relationships.  I may have fewer people in my life now, but the ones who remain truly care about me.  They may not fully understand my illnesses (most doctors don’t even fully understand), but they support me and understand that when I cannot be there, it is not because I am a flake.
In the end, you'll realize you only have a few true friends.
But that's better than having many fake ones.
Finding love and maintaining a relationship can be difficult for anyone, and adding a chronic illness into the mix does indeed add more challenges … but that doesn’t mean it’s not possible.  When it’s the right person (and the right person is out there), s/he will not only understand and empathize with your situation, will but support and advocate for you, too.  So here’s my advice for those who think that illness will prevent them from finding true love:
  1. Get out of your own head.  We are always our own worst critics, and may fear that everyone else is thinking the same thing.  If you keep telling yourself that you’re not worthy of a real relationship, then you’re not giving people a chance to enjoy the wonderful person you really are.
  2. Be honest, and early.  That’s not to say your introduction should be “hi, I’m So-and-so, I have X, Y, and Z illnesses, nice to meet you.”  But you’ll want to let a potential mate know you have a condition that has a profound impact on your life.  If the person is right for you, s/he will want to learn more as a natural part of getting to know you.  If not, it is better for you to find that out as soon as possible.  
    It’s also important to be honest (with yourself) about your own limitations.  Don’t try to do all the things a healthy person could – even if you can force yourself to get through an active evening, you’ll be suffering too much to enjoy the company, and feel even worse afterwards.  Instead, plan dates that are less physically demanding but allow you to get to know each other, like a dinner show, a comedy club, or a paint night for couples.  If you’re flaring, it’s ok to reschedule … or stay in, and let your date bring over take-out and watch something on Netflix.  Remember, it’s not about the things you do (or don’t); it’s about the person you do them with.
  3. Focus on friendship.  I truly believe that the strongest relationships are those that are grounded in friendship.  One of the most important things we need to get through life while sick (aside from health care) is a sense of humor … so look to those who make you laugh when all you want to do is cry … and cry with you until you both start laughing.
  4. Don’t discount another sick person!  In the chronic illness community, we tend to form close bonds with people in online (or in-person) support groups – they are the ones who truly “get” what we are going through, and can often be more sympathetic to our experience.   These are the people we turn to when we have exciting news, when we’re scared, when we’re angry, relieved, or upset.  We literally go to them in good times and in bad, in sickness and in health … and isn’t that just what we want out of a quality relationship?  Now I’m not suggesting that we turn support groups into matchmaking sites; I’m just saying … you never know 😘
  5. Be patient.  We need our potential mates to be patient with us, to understand that it may take us longer to do things, or that we may not be able to do some things we could do just a little while ago.  But we’ve got to be patient with them, too.  We’ve been living with these illnesses for a long time, and we’ve learned to make adjustments to accommodate our needs.  We can’t expect someone new to automatically understand it all and adapt perfectly.  There will be mistakes, misunderstandings, and disappointments (on both sides).  We’ve got to be patient with them – teach them about the ways our illnesses affect us, and guide them towards more information.  Even my husband, who is absolutely my greatest supporter in every way, took a little time to fully come around.  He didn’t realize how profoundly I was affected – partly because I was still trying to put on a brave face.  Once I allowed myself to be that vulnerable and gave him the time to let that sink in, he became even more supportive than I ever could have imagined.

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