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Living With Invisible Illness

Question: 

Two years ago I was diagnosed with Mito.  As horrible as it is to have Mito, I was happy to finally know what had been making me sick for more than ten years.  Unfortunately, most people in my family and many of my friends look at me (I don't "look sick" or need a cane to move around) and think I'm exaggerating my symptoms, or even making things up altogether!  I even had a doctor tell me that my severe fatigue and muscle pain was in my head and all I needed was to get a job so I wouldn't have as much time to feel sorry for myself!  I can't stand the nasty comments, groans, and eye rolling when I use my handicap parking placard or the scooter in the grocery store, so I grin and bear itÂ…and can't do anything the next day because every muscle in my body is screaming.  When I tell people about my symptoms, I always hear "Everyone gets aches and pains and we just take some ibuprofen and keep on going,"  "Everyone feels tired, I work full time and have three kids but I still manage to tough it out", and "All you ever talk about is how sick you are; you don't hear the rest of us complaining!"  I've tried to educate my family and friends about Mito but most of the information out there is written about children with it.  Are there many adults who have Mito?  My symptoms are getting worse every year, and I'm only 35!  I feel so alone.

Ellen in NC

Answer: 

Dear Ellen,

Please accept this cyber-hug {{{{{{{Ellen}}}}}}}.  Mito is a horrible disease, and it can sure feel lonely to be the only adult in your community who has been diagnosed with it.  The good news is that you are definitely not alone!  We live in a wonderful age, with computers and ways to create communities based on so much more than geography.  Here are a few suggestions for connecting with other adults living with Mito:

There are several active and supported online support groups through Yahoo. The three "general Mito" groups that are the most active right now are "Adultmito," "Mitoldies," and one simply called "Mito."  These three groups are well-established, have been active for several years, and have hundreds of members.  These are certainly not the only online support groups available, there are many excellent groups that focus on very specific topics, such as Mito and Autism or parents who have lost children to Mito.  To sign up for any of these groups, go to http://groups.yahoo.com/ and enter the group name into the search field.

MitoAction has many programs that offer support to "Mitovians" of all ages, as well as their families, friends, even their medical professionals.  Some programs to look into are Mito 411, MitoAction Forums, and MitoAction's Top Ten Resources.

Your state has a very active and supportive group, The Tar Heel Mitochondrial Support Network.  They have information about physical and virtual support groups and activities.  Don't miss the weekly international Mito Chat, which can be accessed via computer or mobile phone  (telephone charges may apply.)  For more specific information about this chatroom as well as a wealth of information and support, you can find their web page here.  The UMDF has a list of state chapters and ambassadors that can be contacted for information and support.  You can find contact information about the group closest to your home by searching here.

Mitochondrial disease is frequently an invisible illness.  Family and friends who are not familiar with Mitochondrial Disease may find it difficult to understand that it is possible, and very common to look perfectly healthy while experiencing serious and even life-threatening health problems.  September 13-19 is National Invisible Chronic Illness Awareness Week and  September 19-25 International Mitochondrial Disease Awareness Week ; what a wonderful opportunity to educate the public about Mito and other invisible chronic illnesses!  Here are some articles that you may find helpful, interesting, and validating:

Free eBook  "Chronic Illness Tips: 263 Ways To Do More Than Just Get By" is by Invisible Illness Week founder, Lisa Copen and friends. Over 20 contributors share their best tips to live successfully with chronic illness on a variety of topic. "These experts are people who have the credentials," says author Lisa Copen, "but more importantly, they have experienced illness themselves or health issues of someone close to them. Their tips come from the experience of living with the challenges illness gives us." The chapters include coping tools, relationship issues, career, faith, and practical tips, from traveling with an illness to homeschooling. There are also many tips on how to encourage someone who lives with a chronic illness.

Nearly 1 in 2 people live with a chronic condition; about 96% of those people are suffering silently with invisible illnesses.  (More Chronic/Invisible Illness statistics here)

For more information see http://InvisibleIllnessWeek.com . (In order to gain access to the e-book, sign up for their newsletter and "daily tips", which will be emailed to you.)

101 Tips to "help with ease" for patients with neuromuscular disease 

Mitochondrial Myths for Patients & Families  

"The Spoon Theory"   Christine Miserandino's personal story and analogy of what it is like to live with sickness or disability. 

Open Letter Essay about living with an invisible disability

Study Surprisingly Shows that Chronic Illness is a Taboo Subject  Illness and Culture

Talking To Your Spouse About Your Illness: How Much is Too Much?  Relationship woes

When Your Spouse Doesn't Believe You are Ill

When Friends Turn Away

Can Those with an Invisible Illness Park in the Blue Spots Without Others Seeing Red?    No Cast, No Cane, No Pain   Handicap Parking Placards and Invisible Illnesses; To Park or Not To Park?

Comments

donegle's picture

donegle

10/17/2010

Ellen in N.C., You've just told my story. I was taught to "tough it out". A doctor not too subtly suggested the key to increased health for me was to keep busier. And yes, it is easier to have a name for it. I'm 52 and pushed myself into a heart attack at 39 and stroke at 49 trying to keep pace and ignore my body. With partial diagnosis, I'm doing much better and learning to take care of this condition. Don in New Orleans