Five Things I Wish I’d Known Before My Chronic Illness

Posted by elained @elained, Tue, Feb 19 6:12am

This article is in today’s New York Times: Five Things I Wish I’d Known Before My Chronic Illness.

https://www.nytimes.com/2019/02/18/smarter-living/five-things-i-wish-i-knew-chronic-illness-crohns-disease-ibd.html

I hope this link works. If not, just go to today’s NYT and Google the title of the article.

Regards, ElaineD

@elained, thank you for sharing the article. All five are spot on and I think one of the reasons Connect is successful. It helps us educate ourselves and offers support to help us know we are not alone. Thanks again…

YES SINCE FINDING CONNECT. MAYOCLINIC I HAVE BECOME MORE CONFIDENT IN LEARNING ABOUT ILLNESSES I HAVE. HOW TO HANDLE THEM SEARCH FOR INFORMATION AND LEARN FROM OTHER PEOPLE

Great article @elained. Thanks for sharing that. Support groups like Connect are great because we develop a sense of community that understands where we are coming from.

I especially like the point in the article that speaks of how advice givers often don't understand how unhelpful their advice really is.

Did anyone else find something in the article that resonated with them?

@hopeful33250

Great article @elained. Thanks for sharing that. Support groups like Connect are great because we develop a sense of community that understands where we are coming from.

I especially like the point in the article that speaks of how advice givers often don't understand how unhelpful their advice really is.

Did anyone else find something in the article that resonated with them?

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@elained @hopeful33250 thank you for this article. Each point was right on. I have lived with a chronic disease for over 30 years now and have certainly experienced the so-called advice from others. I constantly remind myself and others that each person walks their own path. As such, each person's response and self-care is important, and is important to share. The feeling that you are not alone even if you are walking an individual path is critical in maintaining emotional and mental balance.
Ginger

@quiteachiver75

YES SINCE FINDING CONNECT. MAYOCLINIC I HAVE BECOME MORE CONFIDENT IN LEARNING ABOUT ILLNESSES I HAVE. HOW TO HANDLE THEM SEARCH FOR INFORMATION AND LEARN FROM OTHER PEOPLE

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Glad to hear that @quiteachiver75. Learning about an illness from your own research and from others who have experienced it gives you a feeling of empowerment, doesn't it?

@hopeful33250

Glad to hear that @quiteachiver75. Learning about an illness from your own research and from others who have experienced it gives you a feeling of empowerment, doesn't it?

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Absolutely, peach

@elained My sister just sent the article to me and it’s excellent. Both of us we diagnosed with different autoimmune diseases at age 69. We’re always finding info for each other. Thanks for posting this article. It’s so true!

@hopeful33250

Great article @elained. Thanks for sharing that. Support groups like Connect are great because we develop a sense of community that understands where we are coming from.

I especially like the point in the article that speaks of how advice givers often don't understand how unhelpful their advice really is.

Did anyone else find something in the article that resonated with them?

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@hopeful3350. Oh, yes. The part that said you grieve a version of yourself that doesn’t exist anymore. I’m working on finding a new ‘me’ who likes to do the same things, only much slower.

I hate it when people tell me "oh, you shouldn't eat that, it's going to make you sick…". I know they mean well, but there are very few things that don't make me sick, and sometimes I want to eat what I want anyway deal with it!
The part about grieving the version of yourself that doesn't exist anymore is very true! I went through a tough time when I had to have the colostomy bag, even though I knew they could reverse it. Then dark days when that surgery caused the adhesions and small bowel blockage . I remember packing up all my ostomy supplies to donate to a clinic and I started crying. I was still partially blocked, on TPN and clear liquids. I was so bloated I looked like I was 5 months pregnant. I said to my husband that this wasn't how this whole thing was supposed to go. My plumbing was supposed to be fixed. Donating all those supplies was supposed to be a happy thing because I didn't need them anymore. And while that was true, I was dealing with another bad situation. I count myself very lucky now that after this last surgery everything is going well, but I think all of us on here that are dealing with these types of issues are hyper aware of every little pain, twinge etc in our abdomens and the anxiousness/ fear that goes with it.

There are some points I would add:

6. You may not get an accurate diagnosis or accurate treatment from the first doctor(s) you visit. Not all doctors know everything about their own speciality, nor do they know when to say "I don't know". Which leads me to 7:

7. You may even be dismissed by doctors who don't know, can't say they don't know, and don't want to be bothered by a 'complex patient'.

8. You may have to fire several doctors (or kiss a lot of 'frogs', as it were). The is time consuming, exhausting, costly, and YOU are the one who is sick and doesn't have the energy for this, in the first place. We all just want to throw ourselves on the first medical professional we meet and hope for our savior. It just doesn't work this way most of the time. Prepare to be BLAMED for whatever is going on!

9. Seek out medical treatment from a major medical center with a medical school and a teaching hospital. You are more likely to get the proper diagnosis and treatment (if there IS treatment) in that setting.

10. Seek out a community of those with your 'condition(s)'. You may have to shop around, all communities are not the same. Since you may have a 'rare condition' your community will more likely to be on line.

11. You will have to keep the records, coordinate your care, educate your helpers, and generally direct the show. Keep a daily diary so you can back track to pinpoint exactly what changed or what developed. If you're lucky you have someone in your life to help with all of this. That person should go to all appointments and tests and treatments, and stay with you in the hospital.

@becsbuddy

@hopeful3350. Oh, yes. The part that said you grieve a version of yourself that doesn’t exist anymore. I’m working on finding a new ‘me’ who likes to do the same things, only much slower.

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Oh @becsbuddy! I sort of adjust to 'the new normal', only to have it change, and I'm in a 'new new normal!"

Because the really active healthy 'me' slipped away so slowly, I didn't even know what was going on. I blamed myself for getting slower, tripping, being unable to ride my new bike, or climb up hills. By the time I actually had my diagnosis, my old self was lost in the dust, over 4-5 years.

In addition I developed a HOST of other conditions in those 4-5 years, that made my life difficult, particularly the severe anemia, which is exhausting. Now I take iron twice a day, no more anemia. But I toured China in 2007 with the onset of severe PN, severe anemia, chronic UTIs. I waited on the steps of every monument, temple, whatever, while everyone else climbed up and went in.

By the time I had a diagnosis of profound PN in 2010 I was THRILLED to know what was going on. However, the doctor wanted to rule out brain tumors (!), MS, spine problems, and a ton of other things. And of course no cause was found and nothing could be done. I developed several more neuropathies in the next 9 years.

The only thing I can do now is assume that the new normal is the normal I will have NOW. And not worry about what comes next.

Regards, Elained

@elained

There are some points I would add:

6. You may not get an accurate diagnosis or accurate treatment from the first doctor(s) you visit. Not all doctors know everything about their own speciality, nor do they know when to say "I don't know". Which leads me to 7:

7. You may even be dismissed by doctors who don't know, can't say they don't know, and don't want to be bothered by a 'complex patient'.

8. You may have to fire several doctors (or kiss a lot of 'frogs', as it were). The is time consuming, exhausting, costly, and YOU are the one who is sick and doesn't have the energy for this, in the first place. We all just want to throw ourselves on the first medical professional we meet and hope for our savior. It just doesn't work this way most of the time. Prepare to be BLAMED for whatever is going on!

9. Seek out medical treatment from a major medical center with a medical school and a teaching hospital. You are more likely to get the proper diagnosis and treatment (if there IS treatment) in that setting.

10. Seek out a community of those with your 'condition(s)'. You may have to shop around, all communities are not the same. Since you may have a 'rare condition' your community will more likely to be on line.

11. You will have to keep the records, coordinate your care, educate your helpers, and generally direct the show. Keep a daily diary so you can back track to pinpoint exactly what changed or what developed. If you're lucky you have someone in your life to help with all of this. That person should go to all appointments and tests and treatments, and stay with you in the hospital.

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@beryl …..Thankyou for posting this advice I am sure it will help…..following each step is helpful,to someone that is lost and doesn't know what to do next …..also explains why , in some cases, they come away with a unhelpful visit to a Doctor…..Beryl

Ive tried to unsubscribe with each email that comes up (around 20 a day) and they keep coming! There seems to be something wrong because it just won’t unsubscribe me either. I want to read people’s posts but just don’t want each individual’s comments being emailed to me.

@julesmaree

Ive tried to unsubscribe with each email that comes up (around 20 a day) and they keep coming! There seems to be something wrong because it just won’t unsubscribe me either. I want to read people’s posts but just don’t want each individual’s comments being emailed to me.

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Hello @julesmaree — It's easy to stop all email notifications. Here's a link with the step by step instructions from the Get Started on Connect guide. Also, you can access this guide from any Connect page by scrolling to the bottom and clicking the Get Started on Connect link in the left column.

https://connect.mayoclinic.org/get-started-on-connect/#stop-restart-notifications

@julesmaree

Ive tried to unsubscribe with each email that comes up (around 20 a day) and they keep coming! There seems to be something wrong because it just won’t unsubscribe me either. I want to read people’s posts but just don’t want each individual’s comments being emailed to me.

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@johnbishop

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