The Long Haul


I am dedicating this piece to a difficult topic, and one that came up in a support group recently. It is a very emotional topic and can break even the hardest of hearts. Sometimes repeatedly. 

A fellow fighter recently shared how hurt and rejected he felt that many of his friends and family have left his life and abandoned him in the years since he has been diagnosed and suffering. 

Many fellow sufferers all over the world can relate. It is a pain felt in every piece of your body and shared by millions around the world. 

The truth is your life will change and does change. Forever

There is no way of sugar coating the fact that you will lose a lot of people in your life, and realize that your circle is very, very small. It’s just the reality of life with chronic illness. 

What did we do to deserve this? Nothing. Is it fair? Nope. Are there any miracle answers for preventing this happening? None that I know. 

Unlike when you might have broken a bone, been in hospital for an operation, had a tooth removed or taken some time to heal from a physical or emotional trauma, the key difference is that you recovered. They waited while you recovered. 

Maintaining a friendship or relationship with someone who will improve with time is far easier than caring for someone who may never get better. Or worse still, they may get worse and need even more help! 

It is too much for some people (a lot of people) to accept. It requires too much respect, courtesy and consideration for very long periods of time. It requires dedication and patience. This is ultimately at the crux of the problem. That’s why people crave remission or cures, so that people don’t keep leaving us as quickly as many other important things keep leaving our lives. Ie jobs, money, independence, mobility, abilities…

People who have been waiting for you to improve or recover don’t know how to face a life time of daily struggle or pain. 

Truthfully, Sometimes I have problems accepting it myself
The relationships you thought would last a lifetime and through any hurdle suddenly break down before your eyes, and no one will tell you why. No one wants to say the real truth. 

Which is… You became chronically ill and for many people that makes you less desirable as a friend, family member or partner. 

It is often true that some relationships are built on what you can offer others and give. 

They tend to find many other reasons, some steeped in a tiny bit of truth, to explain why they have slowly disappeared. Things like; 

  1. You are unreliable.  
  2. You are too needy. 
  3. You are always in bed.  
  4. You are always taking meds. 
  5. You always cancel plans. 
  6. You have new and complicated needs.  
  7. You can’t do what you could for them.  
  8. You don’t have as much money, mobility, independence or health. 
  9. You may get worse and need even more help. 
  10. You need attention and in the past you could be relied upon for giving or a people pleaser, and now you can’t meet these needs. Your needs are now important and overriding. 
  11. You look alright so you must be lying. 

There is a whole range of things that you may never hear spoken openly and honestly but you will see the results are mostly the same. Isolation. 

Of all the people I have endeavoured to help or support throughout my life, very few of them are here now. But maybe this would be true even if I hadn’t become ill? 

It seems a terrible emotional pain to have to carry on top of everything else you didn’t ask for… sometimes doctors will suggest you get counseling. 

Doctors don’t truly appreciate how difficult this topic is unless they are chronically ill themselves. No one ever really understands anything unless it has happened to them personally. That’s just a truth of life. 

Your feelings will just have to accommodate these realities whilst dealing with all the other things you have to contend with. It’s completely unfair. But we don’t really have a choice in some things. That’s life. 

However, Many of us tend to build new friendships and families with those who can truly understand and empathize; Other sufferers. 

We are all different in our disease activity and abilities/disabilities and therefore we will find many different types of people who can help fill these voids. 

I think we become experts at improvising, adapting and overcoming. We have to if we want to survive. 

When people first started disappearing I was saddened. The more time and effort I had spent on the relationship over the years the more it hurt. But then… 

Today I feel far less hurt and more accepting. I take less time to grieve. I see it more like a change of life and identity. A shedding of the skin. 

I feel as though I can drown out the noise and circumstances surrounding the end of a relationship and focus on doing my best to work through the grieving process in the knowledge that it is simply life and life can sometimes be cruel. Realities are not always easy or happy ones. 

But regardless of how many, or how few relationships remain, I remind myself that quality is always more important than quantity

Although our bodies and lives have changed forever, there is still a great amount of things that are still inside us that formed the basis for those relationships in the first place. 

I am reminded of this whenever I laugh with my husband. Joke with a friend. Discuss topics and share ideas. Design things and plan simple events. 

My husband reminds me I am a smart, funny, talented, artistic, generous, caring, loyal, loving, accepting and open minded person … and that’s what he loved most of all. And even now, I still am all of these things. 

That’s truly what I have to offer relationships now, and whoever is in my future, and at the end of the day love is love and friendship is friendship, no matter who and where it comes from. 

There is an old saying that friends are the family we choose ourselves. I believe that never stops throughout our lives. It just takes the ability to keep trying and believing. But always be you own best friend first. 

Gentle hugs, 

Trish. 

9 thoughts on “The Long Haul

  1. Boy can I relate to this article, we all can! I have lost a few people from my life & all along I blamed myself! I blamed me for not being well, I blamed me for cancelling plans, I blamed me for the phone being dropped in my ear as to the end of a friendship & the end of a conversation.
    Took me years to come to terms with all the losses as I became more isolated than I ever had been in my life.
    Now, my strength outweighs all those feelings! I no longer care that a friend of 30 years said to me, “you are always sick”, “you just need a man in your world”! I told her she had no idea of how I felt & walked away, never to speak again!
    Her loss.
    That’s not friendship!
    Bye!

    Liked by 2 people

    1. So true. There are no easy ways to describe the challenges we face. Life is not fair sometimes and people can be cruel. But our soul can be made stronger through these trials xxx thank you for sharing

      Like

  2. I can also relate as I don’t have any friendships older than three years. All my friends who knew the healthy me are gone. Since we moved to a new town I’ve made new friends, some able-bodied, some not. Do I think about my old friends? Yes. Do I miss them? Not really. I try to think of it as their loss.

    Liked by 1 person

  3. You so eloquently verbalize my small world and I know the world of chronic illness sufferers. I shared this with my family cause they are now my “world”. Other friends are past memories. I used to ache for the high paced energy and work world I ran around in daily but now I’m too fatigued to fathom that life or spend energy on imagining I’m “back”. Cause this is me now and my little energy expenditure has to go to those that I love and who have remained. Thank you for your writing. I am moved. You have a gift. These posts could make a wonderful book on living with a chronic illness.

    Liked by 1 person

  4. In regard to former acquaintances who no longer communicate. I think I wish them well and hope they do the same for me. Few things last, including relationships. I do know one thing that lasts. The last words we spoke to each other. So I think it imperative that each know how important the are for me.

    Liked by 1 person

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