Dealing With Loneliness and Kidney Disease

Feel like you’re fighting kidney disease alone? Here are five tips for overcoming loneliness and how to create your support system.

 

 

 

 

 

 

 

 

This is a touchy subject.

It is automatically assumed that when a friend, relative, or loved one is stricken with illness that everyone will gather around that individual and support them. This isn’t always the case. Kidney Disease already robs you of the feeling of control over your body. Suddenly you may start to feel an overwhelming amount of loneliness. If you are one of the fortunate ones who has had 100% support or support so strong that you didn’t even notice the ones who weren’t there, please be grateful for that. There are those, like myself, who experienced the opposite.

When you were first diagnosed with Kidney Disease did you feel like certain people in your life started to drift away? At 28 years old, I pretty much had to stop everything that was fun to me at that time–well a lot of it was bad for me anyway (ooh rah Marine Corps).  I didn’t want to go bar hopping anymore because drinking alcohol caused my body to swell up and feel horrible even though I didn’t drink to excess. Late night events were extremely difficult because I was so tired–like I just ran a marathon tired–just from getting ready. I wouldn’t eat out with friends unless they were willing to go to a restaurant of my choice so I can adhere to my renal diet. There were times where I couldn’t be intimate because I was either too sick or it would cause me physical pain.

One would think that this would bring my friends and family closer to me. Not as much as you would think. I didn’t really expect much anyway.

My momma has and will always be my number one support system. She means the world to me.  I have a cousin who I consider a sister. She got me through the roughest times of my life just by always talking to me on the phone. As blessed as I am for having these two wonderful ladies in my life, I live states away from them. I don’t get to see them as much as I would like to.

I really learned that sometimes a friend is mistaken for “social activity partner.” Because once you can’t participate in things that you used to do, some people disappear. Guess I wasn’t as fun anymore.

Then we have the ones who are freaked out by anything that makes them think about their own mortality. “I don’t DO hospitals.” Regardless of the fact that I was in one, hurting and alone.

I am not off the hook, however, because I have to count the ones I ran off.  There’s no guideline on how to react when you succumb to an illness. My momma (who was a Nurse for over 36 years) told me that it’s best to follow The Five Stages of Grief and Loss because it really is a loss. Of the life you used to know.  The five stages are:

  1. Denial and Isolation
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

There’s no correct order nor length of time in how you go through these stages. I hung around stages 2 and 4 for longer than I’m ashamed to admit.

A ran off a couple of people I cared about.

Showed a really ugly side to one that I loved. He had some…flaws as well. But in his defense he probably never dealt with a sick girlfriend before.

 

So that put me in a dark, lonely place. Probably similar to the dark place you are right now or is afraid of heading to. Let me share with you how I got through the loneliness and built a pretty decent support system.

Stop holding people to your own expectations. Stop that shit. Gotta give you some tough love on this one. You cannot project your expectations of what you would do if it was the other way around. They aren’t you. Hell yeah it hurts knowing that, but the sooner you let that mindset go the lighter your burden will be.

Either reach out to them or let them go.  Now every situation is different. Before you write someone out of your life, maybe you need to hit them up and tell them what you are going  through. Yeah you don’t like talking about your problems. Got it. But are these who you consider your real friends? Your real loved ones who will and has every desire to be there for you in any way they can? How will they be able to do so if you don’t let them know? Now if you have already taken this step and those individuals still are not there for you, then tell them to kick rocks…in your mind and heart. It is easier to just let those people go mentally or literally depending on your situation. Your heart is too precious to allow others to break it every day.

Draw the ones that are still around closer to you. Have that friend who asks you to go to lunch? If you have the energy to do so then do it, or suggest something else that won’t drain you completely. Do not be afraid to make suggestions! Need someone to pick you up some groceries, go with you to a medical appointment, chill at the house and watch Netflix? Ask them. You will be surprised how instantly some say yes. Stop waiting for others to do it, because 9 times out of 10 they are waiting for you to do it. Why is that? Well you’re the sick one right? They don’t want to bother you when you’re not feeling well so how will they know when you have a good day and would like some company?

Talk to strangers. Unless you’re under the age of 18. Don’t do that. But if you are an adult there is nothing wrong with striking up an conversation with someone no matter where or what you are doing. I fell in love with the idea of a “Single Serving Friend” in the movie “Fight Club. Now I know you can’t do that everywhere, people would be looking at you like you’re crazy.  I personally was the one with the big mouth at dialysis and I am not ashamed of it. I love the dialysis techs that took care of me. They went above and beyond to make sure each of my treatments were as good as they can be. We got to know each other and I loved making them laugh especially when I knew they were having a rough day.

Embrace being alone. It’s okay to be alone. No really. It’s okay to be alone.  This is why it is important to ensure that you have a support system (or steady doses of “Single Serving Friends”) to get you through the really rough times. But for those other days where it’s not too bad, dwelling on being alone will definitely not make things better. Whenever I started to have that feeling creep up the back of my neck I would get busy. Read a book, write, wander aimlessly on YouTube until you make it over to that weird side somehow. Get some rest. If you are capable, find a hobby. Exercise, go for a car ride somewhere, make a good meal (or order good delivery). Bottom line, if you’re busy you won’t have time to dwell on the loneliness.

How do you cope with loneliness? Please share your experiences below. 💚

 

 

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  7 Replies to “Dealing With Loneliness and Kidney Disease”

  1. Debbi McCarthy
    August 23, 2016 at 11:36 AM

    Jennifer, thank you for your courageous honesty and for turning your personal struggle into an inspiring call to action. I lost my daughter, Melanie, to kidney disease in 2010. Her birthday is two days from now, August 25 – she would be turning 45. You two would have been kindred spirits. Your observations on the loneliness experienced by ESRD patients is spot on. Even with loving family support, the disease inevitably diminishes the sense of life’s boundless possibilities. i hope your invitation to build community reaches the many who share this struggle. i look forward to watching your organization blossom and grow.

    • August 23, 2016 at 8:34 PM

      Thank you so very much for your kind words. I wish Melanie a Happy Birthday and a big hug to you! I will do my best . 💚

  2. Theresa
    August 23, 2016 at 9:58 PM

    T.y. I needed to hear this today! On 21 yrs.now of hemo diagnosed @32 been through all stages except 5 still on 4 can’t seem to kick it!!

  3. August 24, 2016 at 5:22 AM

    Hi your words about being on your own are true yours Jude x

  4. October 15, 2016 at 8:53 PM

    I was newly diagnosed with kidney disease in April this year. I am 24 years old with no one in my family with kidney disease. Seeing how this disease isn’t publicly announced, yet it’s a common disease, it can be especially hard to deal with. I was on stage 3 of kidney disease in April yet despite taking good care of myself I have gone to stage 4 recently. I am with glomerulonephritis, and that caused my chronic kidney disease. So, of these stages of grief and loss, I’ve been in stages 2 and 5 only. Well, to be exact I cope by realizing that i am not alone with the kidney disease, I’m not worse off still, I can spend time with loved ones, and continuing to do what I love and not changing doing what i love from before diagnosis. Despite the only one in my family with kidney disease I cope well. Many things help me cope.

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