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Life with Chronic Illness: Who to Tell, When, and How Much

Life with Chronic Illness: Who to Tell, When, and How Much

You have been diagnosed with a chronic illness. Perhaps the diagnosis was months, or even years in the making. Tremendous relief at finding the answer is followed by a myriad of questions. One of the first is who should be told… and when… and how much.

This is an intensely personal decision, and one which should not be rushed.

Immediate family members who share a home with you… spouse, children, parents… should probably be told. They will be involved in the day-to-day issues as they arise and may be called upon to assist, or at least to provide emotional support.

Reactions to your diagnosis will be varied and unpredictable, even among those closest to you. Don’t assume that a flat, unemotional response means that they are not taking your situation seriously. Like you, they will need time to process the news and make their peace with it. You might find that some family members take the news very hard and you find yourself in the role of comforter. If that seems backwards or unfair, understand it for what it is — someone loves and cares very deeply about you. They will need time to adjust.

Be prepared to inform them of the basic facts, but encourage them to learn more on their own. You may want to provide them with a source for information specific to your condition. If you don’t plan on sharing the news with everyone, make it clear that you prefer they not discuss your health status with others.

Children will want to know if your life is in danger, if they are at risk themselves, and how their lives will be impacted. For young children, lengthy explanations may only confuse them, but they do need to hear the simple facts. Don’t underestimate their capacity for understanding and dealing with the truth. Let them know that they are free to ask questions as they come up.

There is no legal obligation to inform employers or co-workers about your medical status unless you plan to request special accommodations. Before making such a request, learn your rights under the Americans with Disabilities Act. If your work is not affected by your illness, use caution in sharing your diagnosis in the workplace. It is an unfortunate side effect of chronic illness, but other people’s perceptions of you may change.

You don’t have to share the status of your health with everyone you know. You should make that decision based on your individual circumstances. Keep in mind that with each person you tell, there is the possibility that it will be repeated.

If you plan on getting involved in patient advocacy, fundraising, or any type of online peer-to-peer networking, understand that there is no taking it back once your information is out there. Acquaintances and strangers alike will feel free to comment on your health and the health care choices you make.

If you are a very private person and wish to remain so, think long and hard about who you tell… when… and how much.

You have a chronic illness, but you are so much more than that.

Writer Ann Pietrangelo embraces the concept of personal responsibility for health and wellness. As a person living with multiple sclerosis, she combines a healthy lifestyle and education with modern medicine, and seeks to provide information and support to others. She is a regular contributor to Care2.com’s Reform Health Policy blog in Causes. Follow on Twitter @AnnPietrangelo.

Read more: Blogs, Conditions, Family, General Health, Health, Living with MS, Multiple Sclerosis, , , ,

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Ann Pietrangelo

Ann Pietrangelo is the author of No More Secs! Living, Laughing & Loving Despite Multiple Sclerosis and Catch That Look: Living, Laughing & Loving Despite Triple-Negative Breast Cancer. She is a freelance writer and member of the American Society of Journalists and Authors. Follow on Twitter @AnnPietrangelo

38 comments

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1:03PM PDT on Aug 29, 2011

Thank you!

9:49AM PDT on May 18, 2010

No one is happy why is this ? I think only yoga teachers are healthy oh god why we all are here with sufferings what are our sins ?

8:38PM PST on Mar 4, 2010

There are so many chronic illnesses which are from asthma and diabetes to lupus and lung disease and that each one affects your body differently and its important to take care before they happen.
investments business daily

4:33PM PST on Jan 30, 2010

Thanks.

2:12PM PST on Jan 29, 2010

MAJOR development and validation for CCSVI in MS patients. This is great news and I hope this link works, just cut and paste to the address line - http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20100127/ms_treatment_100127/20100127?hub=Health&s_name=

You can also join my group at "MS Liberation - End Multiple Sclerosis". We can do it!

2:10PM PST on Jan 29, 2010

I have created a petition to Health Canada and I hope you will help me and sign and promote it with me so that we can end multiple sclerosis. It's called, " END MS Liberation Treatment" click on the link and type the name of the petition in the search petitions area, Petition powered by ThePetitionSite.com. I really think it makes sense and needs to be looked into. If anything, it sounds hopeful for those of us with primary- and secondary MS. Give it a read and decide from there. Thank you!

3:28PM PST on Jan 19, 2010

I could not keep it to myself, I had so much pain all of the time, and scary symptoms when I had flares/exacerbations. But, I worked for a health care agency, and they did not care, even worse; they tried to fire me for years rather than complying with requests for accommodations, no matter how minor. It was awful. I have only been out of there for less that 3 weeks, and it is like a prison release. I am still hurting, but at least I am not harassed daily. I say, tell to the fewest, and the least information required. Pick your confidants carefully. It hurts your health further to be disbelieved. Find a support group and a compassionate doctor. JL

4:35AM PST on Jan 19, 2010

I recently came across your blog and have been reading along. I thought I would leave my first comment. I don't know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.

NADIA ANN
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9:04PM PST on Jan 10, 2010

Thank you so very much for this.

12:04AM PST on Jan 4, 2010

I have lupus, rheumatoid arthritis, fibromyalgia, and asthma so pretty much everyone can see there is something wrong with me. I have to go up stairs one by one slowly because of my knee joints. I use my asthma inhaler in public. I will get sharp shooting or stabbing pains and I will wince. It's really hard to hide when you are in pain. Plus if something happens people can already know what to do for you if you just tell them upfront. Same with allergies, I am severely allergic to the IVP dye in a CAT scan. They gave that to me in the ER and I almost died! My father kept the fact that he had cirrhosis of the liver from my mother and me. He suffered in silence for 15 years before it took his life. He could have gotten on a transplant list but I guess he didn't feel he deserved it.

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Disclaimer: The views expressed above are solely those of the author and may not reflect those of
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