Dealing with the emotional side of chronic diseases

By ethansmimi Latest Reply 2011-04-28 12:23:41 -0500
Started 2011-04-26 23:28:09 -0500

Hi everyone,
I'm new to this site but so far I think it's great. I have multiple health issues: diabetes, RA, fibromyalgia, asthma, heart arrythmias, blood clotting disorder, and various other things. Because of my extreme sensitivity to medicines and lots of medication allergies, I have to take prednisone every day to try and keep my inflammatory process under control. I have gained a lot of weight being on prednisone for the last 3 years but my doctor pretty much says I have no choice and that weight is the least of my worries. My question is: how do you deal with this negative self-image and the day to day toll of being chronically ill? I am also wondering if anyone else gets negative feedback from family members? I live alone but I have family members who just think I'm fat and lazy and say very hurtful things. Somedays it's more than I can take. Does anyone else deal with this?

13 replies

GabbyPA 2011-04-27 08:27:52 -0500 Report

This is such a relevant question. Specially since most of the chronic illnesses that you are dealing with are "unseen" and therefore, to many, don't matter much. That is why I love it here so much. People get what I am dealing with and know when to comfort me and sometimes know when to give me a push.

I have a visualization that I do when I am feeling powerless. It's a little corny, but here goes. If any of you are familiar with Disney's Fantasia, you know the Sorcerer's Apprentice. There is a scene where Micky is one a peak, calling the oceans to crash on the rocks, reaching for the sky and the stars to speed through the heavens. To me, it is a powerful moment and one that I use when I feel like I am being defeated. I bring it to mind, music and all and it seems to make me feel like I can do anything.

There is a great discussion that Dr. Gary just started about overcoming the hurtful words that people say.

cottoncandybaby 2011-04-28 07:17:17 -0500 Report

Great idea, Gabby! It is like when I make myself go to the gym, but once I am on the treadmill and plug my ipod into my ears, I always first listen to a song by Faith Hill called If my Heart had Wings, it always gets my energy going! Music can really do wonders, everyone just has to find the songs that pump them up and make them feel good about themselves. . .

tabby9146 2011-04-28 12:22:39 -0500 Report

I love my music and it lifts my mood all the time. I also love to get my ipod and get on the treadmill :-)

ethansmimi 2011-04-27 10:35:49 -0500 Report

Thank you so much for that visualization. I love Fantasia. I do listen to a lot of uplifting music that helps me feel more positive. I recently had a 2 week bought with asthma and severe bronchitis so I was confined to the house doing breathing treatments and just trying to stay out of the hospital. I need to be around people so I am glad to finally be getting back to my normal routine. Thanks for the link for Dr Gary's discussion. Have a great day!

Harlen 2011-04-27 06:40:06 -0500 Report

Hello and welcome
How you fell for you is the big thing .and if they dont like it they can lump it lol
My famly would not do it they fear me lol lol and they need too lol lol
Best wishes

ethansmimi 2011-04-27 10:37:22 -0500 Report

I know, I let people get to me. It's unfortunate that the main problem is my mother. I really try to do the "honor your mother and father" thing so I keep trying but I need to learn to put up a shield and not let her words get to me. She is just extremely critical and healthy as a horse so she can't relate. Thanks for your input.

jeffrey9127 2011-04-27 10:48:39 -0500 Report

Sometimes the people we think should love us unconditionally are our worst critics. I know what you are going through. Keep positive, and try to not let people bother you. I know it is not easy, but sometimes you have to avoid these critics until they learn that you are not interested in hearing their negative comments. Good Luck!

ethansmimi 2011-04-27 10:57:55 -0500 Report

Thanks Jeffrey for the advice. Yeah, my mom just called to "check" on me. I tried to keep the conversation brief and to the point so I couldn't give her any ammo to use against me! It's sad, but I guess that's the way it has to be for now. I hope your day is a great one!


jayabee52 2011-04-27 04:08:34 -0500 Report

Howdy Brenda! Welcome to DC!

Are you aware of the other "communities" which are associated with this one?
If you are not, there is a black band on the top of this page, with "visit another community". There you will find communities for Arthritis, asthma, heart, fibro and many, many others. Take a look, and join which ones interest you. I am on several others myself.

How does someone, anyone, cope with the negative image of chronic illness? I suspect that each person with diabetes ("PWD") here on DC deals with it in their own way. One of the ways I deal with it, is I hang on DC. Here is the most positive group of PWDs around. Ppl here give lots of love, hugs and encouragement, especially when you're down.

As far as being around people who give you negative feedback, either minimize your contact with them, or cut them out of your life altogether. If you have upbeat friends in the real world, spend more time with them. And spend time with us here on DC too, because we know what it's like to "walk the walk" of our conditions.

Your profile of "medical challenges" sounds very much like that of my bride "Jem" when she was alive. (she passed from this life in July '10). I met her through a dating website "Dating4Disabled". She contacted me in Nov '07 and we soon were in love.
She had CHF, RA, Fibro, COPD, Lupis (SLE), GERD, CKD, female organ problems, and several other "medical challenges" as she laughingly called them. To top it all off she had been totally blind since age 14 due to a severe case of retitinitis pigmentosa. She too couldn't use the RA, SLE and Fibro meds - pretty much all the same — due to allergies. And she had to use prednisone and cortisone shots too. She also was allergic to most antibiotics, to latex, and adhesives to most medical tapes.

I quickly grew to love her because of her wit, intelligence, honesty, "pluckiness", and her loving nature. Many people loved her dearly, and I was fortunate enough that she let me into her life to share it. I knew that we may not have long together, but we wanted to make the most of the time we did have, so things progressed rather rapidly. I had no idea just how short our time would be together. I had hoped we would have had a few more years together, but —- it was not to be. But I'm still glad we were together for the time we had. She made me very happy, and her long time friends and her relatives told me that I made her life happy too. I don't intend to give you a blow by blow rundown of our life together. I've written about it a lot, and if you want, I can give you more details later.

The reason I tell you about Jem is she had a lot of "challenges" to be sure. But she had a lot of support from her family, and friends, and lastly me. Those ppl who were "downers" or "energy vampires" in her life didn't last long with her. She focused on folks who were either upbeat, or at least neutral. Did she have some down moments? Yes, she did. But she talked to her friends, and later in her life, me, who would and could put things into perspective for her. She didn't stay down for very long, especially because she had positive ppl to pick her up again. And she did the same for me, when I got downhearted.

I remember a quote I saw in a hospital in which I worked: "Life is 5% what happens to you, and 95% your response to it!" (Annon) I have found that to be true. I don't know about the percentages, but it is true whether it is 1% or 5%.

And about people making you feel bad, there's a quote attributed to Eleanor Roosevelt: "No one can make you feel inferior without your permission."

So if you wish to salvage your relationship with your relatives, sit down with them and tell them how their negging remarks affect you. Then educate them about your conditions. Let them know that should the negging remarks continue, you will, for your own mental health, have to severely llimit your contact with them.

Praying God's blessings upon you and yours

James Baker

EDIT: I just noted a new article by Dr Gary which may speak to your situation: Here it is:
Dr Gary has some helpful ways of looking at things. He counsels ppl who have chronic conditions in his real life work. It might be helpful to you to get to know him (you might want to send him a freind request).

ethansmimi 2011-04-27 10:47:20 -0500 Report

Hi James,
Thank you so much for sharing your story. I got married in 2008 to a man who promised my kids and my parents that he was here to make my life better. He left after 5 months of me throwing up from methotrexate injections. He said he just couldn't deal with it.

I have been down lately due to being stuck in the house from asthma and bronchitis but this week I am finally able to get back to school and a somewhat normal routine. I know I have a lot be thankful for and I am doing the best I can with what God has given me to work with so I need to let negative comments roll off my back. I need to learn to stay busy while talking to my mom so I can only half listen. I've tried not talking to her at all but deep down inside I guess I'm still trying to have a relationship with her.

I am in school working towards my bachelor's degree and I take care of my 3 year old grandson a couple of afternoons per week. I love learning and have been in school for awhile now but it forces me to get out of the house and have goals to work toward. The point is, I am far from lazy. I just have to let others comments go. It's like Gabby said, most of my diseases can't be seen so others judge me unfairly. I find myself judging others by physical appearance and I quickly remind myself that that is not fair. No one knows anyone elses story.

Thanks for the link to Dr Gary. Gabby also suggested it so I am defnitely going to check it out. I am so glad I found this site. Thank you again for your support and encouragement!


jayabee52 2011-04-28 03:23:38 -0500 Report

Howdy Brenda You're most welcome!

My Jem had to take methotrexate injections. Before I came on the scene her mom had to give her the injections, then once I got there I did her injections. I really don't remember what her metho. was supposed to combat, but Dr. determined it wasn't working for her so DC'd it.

If you want to salvage your relationship you might want to Google "I messages" where you can learn how to communicate your feelings, without anger or blaming. When it is done well, it can be very effective, or at least it was effective for my (now ex) wife who used it with me. I wanted her not to feel those feelings she shared with me, so I changed my behavior. Of course, the person to whom you send the "I message" has to love you for this to be effective.

I pray you found Dr Gary's discussion helpful.

Blessings to you and yours


ethansmimi 2011-04-28 09:36:02 -0500 Report

Methotrexate is usually given to help slow down the deterioration of RA. It is like low dose chemo. I had to discontinue it because I started having severe nausea and felt like I was going to pass out after each injection from the throbbing in my head.

I know it takes a lot of patience, understanding, and love to live with someone who is chronically ill. Your wife was very lucky to have an understanding husband like you. I guess not everyone is cut out for that.

I have tried to explaiin to my Mom that some of the comments and criticisms she makes are hurtfiul but she blows up and starts screaming and yelling. She is great at dishing out the criticism but can't take any of it back even in a calm, rational way. My daughter tells me to just give up on it but I know my parents aren't going to be around much longer so I keep trying.

I did fiind Dr Gary's discussion helpful and interesting. I think one of the problems with anyone who has a chronic disease is loneliness, especially during times when you can't leave the house. I struggle with that because I am home alone alot these days. I prayed for a way to find friends and I am so glad to have found this website of new friends and support!


Next Discussion: Hello »