Grieving Your Partner’s Previous Self: The Painful, Emotional Journey of a Progressive Disability

When we met, I knew this was the person I wanted to spend the rest of my life with, grow old with, trek the world with. He was healthy, strong, and ready to take on the world with me.

Life, on the other hand, had a different plan for my husband-one that would also impact my own.  

In our case, the insidious disease that had been lurking quietly in the corner, waiting patiently for the right time to attack- was Multiple Sclerosis. 

Early on we had the talk about what the disease was and how it could eventually impact the both of us.  But- at that time, he seemed invincible and the thought of him succumbing to a disabling disease was something I just could not fathom. 

In my mind, I thought that when it happened I would be able to take care of it for him and fix any problems he would face.  

But that’s now how it works, unfortunately.

 

So, I ignored it. 

We both ignored the signs as they became more and more prevalent. 

 

Why?  Because I was scared.  

And – my husband was scared.

 

So – we both swept it under the rug until it reared its ugly head.

What many fail to recognize is that there is another person that is deeply impacted by the progression of someone’s illness.  Chances are, there’s a loved one standing by their side; invisible to others.

It’s truly terrifying watching your loved one lose their abilities and sense of self little by little- while you are unable to help.  

Sure, you stay positive and can help with certain things- but you can’t stop the advancement from happening. 

No one can.

The pain you feel inside as you see your partner lose hope and give up is unimaginable. It’s human nature to want to try to fix problems for someone you love.  

You will try as hard as you can but will hit a steel wall as strong as Fort Knox.

That in itself is painful because the reality of the situation is now right in front of you. 

You need to grieve, but no one seems to understand and can’t really be there for you.  Others don’t see the downward spiral and can’t begin to know how scared you are.

You feel selfish for even considering speaking to someone about the pain and fear you are feeling as you slowly lose the person you love. 

I mean, how dare I feel afraid and depressed when I’m not the one with the disease-right?

The hopelessness and anger your partner feels for being stricken with a disease is so palpable you could cut it with a knife.  At times, they may even lash out at you for being healthy and positive. 

 But-you don’t let it get to you; you stay stoic throughout the emotional episodes they go through.

Sometimes they cannot come to terms with the hand they have been dealt; pushing away loved ones and retreating inwards as deep as they can go.

It took me years to understand and acknowledge that it’s NOT selfish to feel emotional pain or fear, even though you’re not the person being physically impacted.  

 

The Journey is Emotional for the Both of You

The pain you feel is real, and being by their side throughout it all means you’re part of that journey they are taking.  

• Being along for that journey means seeing the frustration in your partner’s eyes as they realize that the restaurant you used to frequent is not really wheelchair friendly as you cannot roll through the tight, crowded table setup.  

• It means seeing the hurt in their eyes when they feel inadequate for not being able to take you certain places anymore or see you unable to enjoy some of your previous favorite activities such as walks on the beach or vineyards.  

• It means seeing the insult in their eyes when medical staff assumes you are the caregiver and not the spouse.  The message that sends is just because they are in a wheelchair and disabled,  that they don’t have a loving and supportive spouse.  

• It means being the one to explain to their family what kind of limitations exist- as often family members don’t want to see what is really in front of them. In our case, I am the one to educate them as he refuses to talk about his disability with anyone else but me.  

• It means seeing the anger they have for not being able to do things they could do before, like installing a new light fixture or changing a car battery.  They now have to “give in” and pay someone else to do it. 

• It means seeing the self hate they have for no longer being able to provide or take care of their spouse/loved one due to their disability.  Unfortunately, men often seem to feel that they need to be able to provide for their wives and handle the problems that arise. I’m not saying that’s right (I certainly don’t think it’s fair to put that type of responsibility on someone just because of their gender) but it’s just how society seems to view it.   
• It means seeing the sadness in their eyes when people speak to me instead of directly to him; often asking questions that pertain to him.  Some people feel uncomfortable and seem to think being in a wheelchair also means the person can’t think or speak properly.  That is how it makes him feel and I have to correct them each time.  
• It means seeing the fear in their eyes as they encounter or develop a new symptom, or begin to lose their physical ability such as weakening legs or grip strength.

 

 

My hope is that others can better understand how a disability can emotionally impact many involved. 

If you are the “other half” of someone that has been stricken with a disabling disease, know that you are valued and matter more than you know.

Just because your pain isn’t visible; it doesn’t mean it isn’t there.  You aren’t selfish for reaching out to others for support.

 

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