The Invisible Person Behind The Invisible Disease

Hey all. You are in for a treat today. Jen has submitted her first, of hopefully many, installment to this blog. Although she finds it much more difficult to lay things out for the general public than me, she is a much better writer than I. She has been amazing through this storm of MS in our lives, but it isn’t easy. She is a bit apprehensive about letting people know exactly what someone forced to the sidelines goes through during something like this, but I know there are others out there who experience the same feelings, and will benefit from learning others feel the same as they do. It’s insightful, intelligent, and most importantly, honest. I hope you both enjoy, and learn something new from this post. Now, ladies and gentlemen, the incredible Jen!

Okay, so Doc’s wife here. Doc has been urging me (i.e. persuasively nagging me) to write a piece for his blog for a while now. Understandably he wants to give me the opportunity to talk to those of you like myself, who are emotionally attached to someone struggling with MS. To help be a voice for those people who are caregivers. He intended this blog to help all types of people affected by MS, not just those diagnosed with it, which means his experiences dealing with MS are only one facet of this situation. So great (you think), write about how it feels to care for someone with MS. Reach out to those other caregivers, say what is on your mind . . . sounds enlightening and helpful, right?? Well it could be those things, but it could also be honest, realistic, terrifying and even brutal. Unlike Doc, I am not built to talk to the faceless masses of the internet. I am not wired that way. And to be honest, the last thing I’ve wanted to do is tell people how I really feel about Doc’s and my struggle with MS.

What most people who care for someone with MS aren’t going to tell you, is what they really feel like. Why? Because quite frankly everyone just stopped thinking about you. Because just as MS might be called the invisible disease, care takers of people with MS, or cancer, or any other life threatening disease, in a matter of seconds become the invisible person. The National MS Society (NMSS) even addresses this in their literature for caregivers:

“It is easy to feel invisible. Everyone’s attention goes to the person with MS and no one seems to understand what the caregiver is going through. Many caregivers say, “no one even asks.”

One minute you are part of a team sitting in a cold sterile doctor’s office listening to an unfathomable diagnosis from a neurologist that, if you are lucky, is only 80% cyborg, (sorry neurologists you may be brilliant but warm and fuzzy is not how I would describe you)!  The next minute you disappear into the world of the person living with the person with ‘insert terrible disease here.’ In a matter of minutes not only did the person’s life whom you care about just completely change, but so did yours. That is something a lot of people don’t think about – you. Now some of you just read that and thought wow what a bitchy thing to say, how selfish, your husband has MS, what about him! Ding ding ding . . . tell them what they won Bob, you just discovered why most caregivers don’t want to talk about it. The NMSS addresses that as well acknowledging caregivers reluctance to reach out to people because it “. . .seems like disloyalty to a partner or family member, or a caregiver fears being labeled a complainer.” So hence the reason I have been struggling over how to write this blog. I could write it like the loving, Mother Teresa like selfless care taker that everyone expects themselves and everyone else to be when tragedy hits. It’s true, society expects it. We have all seen those movies where someone’s love of their life is dying (well admittedly I haven’t because I hate those movies), and the other person sacrifices their entire life for that person. They say things like I will never stop loving you as they walk along the beach that is somehow always in these movies, they marry someone with an inoperable brain tumor that will die soon just for “love.” They never once utter a word about being overwhelmed, scared, angry, or being completely terrified that the entire version of their own future that they had planned out, and worked very hard towards building, was just ripped out of their hands, torn into pieces, and set on fire by fate.

The expectation that has been ingrained in us is that when something like this happens in your life you will just put the other person first and do everything necessary to help them. And yes, that is what most of us try to do, but what is not understood, or ever talked about, is how that makes you feel.  You are left completely helpless and no longer in control of where your life is headed and you aren’t even the one who is sick.  I use that expression intentionally because that feeling, the “I’m not the one who is sick so I shouldn’t say anything,” is overwhelming.  The minute you leave the doctor’s office, the next weeks, months, etc.  you will continually get asked “how is (insert person with MS here)”?. After that final doctor’s visit when Doc was diagnosed I had a permanent bit part in the film entitled How is Doc. Sometimes how are you both doing, but mostly how is Doc. How is Doc whose life was just turned upside down by this incurable disease.  How is Doc who is sick. You are not sick, you are supposed to feel fine, you are supposed to be going to doctor’s visits, taking off work, taking on more and more of the daily responsibilities because the person who is sick can’t, deal with that persons depression, anger, feelings of isolation, withdrawing from you and life in general, all while keeping friends and family abreast of how someone else is doing. You aren’t supposed to appear tired, worn out, nervous, irritable, sad, or god for bid just freaking pissed off that all this is happening. You are expected to just be going through life like normal while it is the other person who is struggling. However what the other person is going through effects every moment of your life. First and foremost someone you love is sick, that is overwhelming enough, but then try to realize that every routine you are used to in your life with that person suddenly changes. They change, they go through depression, they withdraw from you and everything else as they try to deal with their diagnosis, often times shutting you out. They feel so terrible some days they can hardly speak to you and you have to be beside them trying to be understanding, helpful, and compassionate while not expressing your own fear or disappointment in not being able to communicate with the person you love like you are used to. It is hard to explain what a mind warp that is, to be scared and worried about someone you care about while at the same time feeling frustrated, disappointed and even resentful that you can’t experience time with that person like you always have. Guilt anyone? You go through feelings and thoughts you can’t understand and you would never dare bring them up to anyone else because what is expected of you is to be totally accepting of this situation. When people ask me how we are doing, what I will say is something like “Doc has had a tough week but he will be okay.”  The truthful answer would be “well Doc feels terrible, he spent 6 hours asleep on the couch yesterday, which is one of our only days off together and the most I’ve seen of him all week so its really hard on me to have a relationship with the person I love when he can hardly move, let alone he has had such bad tremors for the past week which makes him really self conscious so he doesn’t want to spend time out with me or friends, leaving me feeling isolated socially and missing the time we used to spend out together, and he shakes in his sleep all night so I haven’t slept for more than a few hours a night and am exhausted, oh and I haven’t seen a friend in weeks because when I’m not working terrified about my income now that my whole life savings plans were just completely shattered I am at home taking care of Doc, taking care of the animals, cleaning, doing all of the yard work and trying to fix everything around the house while not getting upset about any of this or dwelling on the fact I have no idea what kind of relationship I will be able to have with my husband in the future and how I will handle it.”

Now the NMSS also addresses all of this as well urging caregivers to find a support system, and to make it a priority to keep doing the things that you are used to doing in your life. To reach out and tell people you need help too. But the reality for most caregivers is that that is a really difficult thing to do. Not just because of your personal struggle with how you feel and how the person you are taking care of feels, but also because you are exhausted, stressed, and probably going through depression yourself. I mean what are you supposed to do, break out into “what about me?” by Moving Pictures every time someone asks you how the other person is? Trust me I’ve thought about it but then I would have to explain to anyone younger than their 40’s who the Moving Pictures are and why that chorus never leaves your brain when you haven’t heard the song in 20 years. Honestly, people stop reaching out to just you, and that is not anyone’s fault. I now am in a position to realize that I have done the same thing to friends who had someone sick in their life. It is really important to recognize that a caregiver is still their own individual person, immediately lumping them in with the person who they are caring for makes them feel invisible, and just contributes to their feelings of being isolated and not being able to talk about it without feeling guilty or selfish. A good friend took me out for breakfast and she had recently had some health issues going on that provided her with a different perspective on things. She asked what she could do for Doc, of course, but then she did something that was so meaningful to me, she asked me “what can I do for you while you are going through this, how can I help you because I know everyone is focused on Doc?” Just having someone utter those words to me was like a boulder being lifted off of my shoulders. It was the first time someone actually acknowledged that yes, people are probably overlooking you in this whole situation and I’m going to take the pressure off of you by saying it out loud. I’m going to take away the feelings of guilt and selfishness by acknowledging that Doc isn’t the only person in this fight. I told her the best thing that she could do is exactly what she was doing. Take me out, talk to me, get me out of the house for drinks and let me not worry about Doc for a few hours, but make it easy on me at the same time. Plan it, say let’s meet here tonight because my whole world now is having to constantly think about, and sometimes for, someone else. Another great friend whisked me away on a girls weekend with no mention of Doc unless I brought it up. She knew I needed to do something for myself, and she knew me well enough to know I wouldn’t put myself first so she planned the trip and I just showed up.

It is okay to not ask the caregiver you know about the other person every time you talk to them, it is even better to ask them about them and just them sometimes. Allow them to stop being a bit part in the other persons life (yes that’s an ode to a great The Lemonheads song) and grant them the freedom to feel any way they need to about what is going on. Don’t just assume that they want to live in that fictional beach house and wear cozy cardigans while the person they love is dying yet strangely never goes to the doctor . . .we go to the doctor a lot . . . what is wrong with those movies?!. The reality is a lot of relationships don’t survive long term diseases, and it is not because the other person is cruel, selfish or didn’t try. It is because it is overwhelmingly difficult, and we are all just human. Love doesn’t conquer all, people have to do that themselves. Just ask  Deadpool, now that’s a much more realistic movie about living with an incurable disease! Maximum effort!




4 thoughts on “The Invisible Person Behind The Invisible Disease

  1. I call my mom frequently because I worry she is not caring for herself. She has to care for my stepdad, and her parents. She never calls me to complain because she feels guilty if she does. That awareness has made me a better friend and coworker because I recognize that behavior and I am able to care for that person in the moment. I’m glad that you have good friends who care about you, Jen, and care for your emotional health.

    Liked by 1 person

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