Saturday, September 5, 2009

Dealing With Isolation Due To Chronic Illness


How can we deal successfully with the isolation that unpredictable flares associated with Rheumatoid Arthritis or chronic disease bring about? This is a serious question many subscribers ask, and it's a problem we all experience at one time or another.

Those of us who deal with chronic illness greet each day knowing it will have challenges, but truly the most destructive challenge is that of isolation.
Chatting with fellow sufferers I've learned this is an issue we all face.
Sadly, our circumstances distance us from those we need most, our family and closest friends. The longer we deal with chronic illness the worse things can get; most people tire of inviting us places because we end up being a no show.

One of the unforeseen consequences of chronic illness is "social isolation" which refers to a negative state of aloneness or diminished participation in social relationships.
This happens to us in two ways; the symptoms and difficult regimens along with loss of energy force us to withdraw from most social contact or we are abandoned by friends and relatives because we don't 'show up' when invited to functions. In either case social relationships are disrupted, falter and break down.
Anyone suffering a chronic condition will tell you that they have lessened or impaired social contact and a sense of increased social isolation. It's been proven that social isolation has a detrimental consequence on us as humans with or without having chronic illness.

Those of us who have RA and deal with flares need lots of rest and can't push ourselves or it makes our illness worse. The longer we're chronically ill the more isolated we become. This can and does defeat all the good effort on our part to stay healthy physically, emotionally and spiritually.

What can we do to help ourselves? Personally I've found it helpful to reach out to others who share a chronic illness. It can be in the form of an email or visiting with new friends on a Social Media site like Twitter, StumbleUpon or Facebook.
I enjoy meeting people from around the world and sharing.

Maybe a pet will help? I will expound on this subject in a later post. (Recently I rescued a cat and she is helping me feel less alone.)

I've found that getting involved in anything you enjoy doing alone can help; then practice expanding that interest.
At times we may need support professionally, especially if loneliness becomes as chronic as our disease. Chronic isolation can and does cause depression.

Whatever you do, don't blame yourself. Remember despite various treatments for RA it remains unpredictable.
How often you have an acute flare-up depends on each individual and we respond differently to stressors as we do to therapies.
Rheumatoid Arthritis is not a 'Cookie-Cutter' disease; we are all unique. There is no cure or control over this disease. We must continuously adapt to our disease state.

Please, whatever you do, stay "positive" and do whatever helps you cope within your means and limitations.
I truly believe the quote, "When it is dark enough, you can see the stars" ~ Ralph Waldo Emerson

Never give in to self pity. Keep hope alive and know that tomorrow is another day.
If possible get outside and enjoy the sunshine, that will always brighten your spirits.


"Good Health to You"

"The Autoimmune Epidemic: Bodies Gone Haywire In a World Out of Balance" - by Donna Jackson Nakazawa.
This book is a timely read to inform and better understand the empidemic in autoimmune diseases.

SandyGuerriere - Twitter
artistrybysandy - StumbleUpon
Sandy's page - Wilmington's 3rd Street Plaza

Photography: Stephanie Moore Photography

© Copyright 2010 Sandy Guerriere. All Rights Reserved.

21 comments:

Anonymous said...

This lady is not only a dear friend but a dedicated research friend to all who suffer from this lifelong, crippling and painful condition. My wife suffers from RA, has been diagnosed with it for 8 years now. She has had all of her knuckles replaced, has join cysts and is in pain daily. Sandy's research offers new insight to available remedies to try and an all around uplift for those in this condition. Thanks again my friend, another wonderful presentation.

Tom Rieber said...

Read your blogs and it was like you were inside me. Even though I don't have RA, I live with that chronic pain that makes me so angry. I guess it is that I can't do the things I used to with ease anymore. I, too, am a type A, active, love to walk on the beach, play golf, hike and all that but just ca't do those things with the enthusiasm I used to. The problem is that if affects my focus on everything else--even my writing. So I am thrilled to meet someone who understand that and will be listening to what you write.
Tom Rieber, Author

Anonymous said...

It feels as though i was writing this,i have had RA for over 20 years.You are so right when you say, about being isolated. I was widowed last year and,have never felt so isolated in my life. My kids kept on to me to get a PC.So i took the plunge,and here i am today,i have friends all over the world,and i feel i have a new lease of life! Thank you so much!!!!

Tom said...

Sandy is a rare and gifted talent of compassion and human nature. She has and is suffering from this terrible desease, yet finds the time to offer quality advice to those of us who; as she, suffers with RA. Many times Sandy has shared helpful diet and pain management programs. She continues to champion diet and continues to be a becon of hope ! Way to go Sandy !!

Robin Easton said...

You are one of the most remarkable people I've met. No matter what is going on you are ALWAYS, I repeat ALWAYS, kind and compassionate. SO filled with vitality and love that you spread it to all those who touch your life even in the tiniest of way. I find that so inspiring and strengthening. I love you for it. You are a living example of love and light. You REALLY REALLY are. Love, Robin

Bruce Brown said...

Sandy, Your light shines brightly. Your strong spirit and gentle focus serve as a duplicable example for those who suffer the same or similar conditions. Thank you for what you bring to us all, and for being you. With Love and Respect, Bruce

Anonymous said...
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Donnachada said...

Not just because Sandy is my best and dearest friend, but Sandy has spent countless hours on research, not just for herself, but for us as well, and that is why she shares it with us.

Doctors really work for the drug companies and not us. There are only a handful of old school doctors out there that do it for the sake of doing it to help people, and yet they are off in other countries working in deplorable conditions, just so they can help a fellow human being.

I am beginning to loose faith some times in doctors, they don't seem to listen anymore. They dole out a prescription like it's the wonder of the century, and you get to the drug store, and they offer you smelling salts before you get the bill.

Some of these medications I don't think really do any thing positive. The potential side effects are a book alone. By the time you read the potential side effects, you feel worse off than you did before.

With Sandy leading the way, we can make a difference. Let's change the way we eat, and think and start looking out for ourselves.

thetruthaboutjra said...

Sandy,

You are so lucky! I would love to live at the beach some day. I believe it would really help with the ra.
I've had juvenile rheumatoid arthritis since I was about 12 years old, I'm almost 21 now, so that makes it about 9 years that I've had ra.
I've taken so many meds. I started out with prednisone, then methotrexate, enbrel, plaquenil, sulfasalizine, and orencia. I was allergic to sulfa, so couldn't take plaquenil or sulfa. I am on only 5mgs of prednisone right now!
Have you gotten your ra under control so that you do not have to be on meds anymore? I read a about your diet, the Mediterranean diet.
Finding it's a little more complicated for me because I have so many food allergies. It would be really interesting to hear how you got off meds, can you lead me to a post on your blog if you've already written in detail about it?
I don't see my rheumatologist very often because he puts incredible pressure on me to start medications.
I have done reading on how detoxes help with chronic diseases, but there are so many different programs to follow. Have you done any?
I am about to start one and need advice!
Any information on how you developed your diet would help me immensely!
If you have any good books or website suggestions, let me know. I will continue to read your blog archives for info!

Thanks for your support!
-Robin

mygreenside said...

My younger sister had juvenile rheumatoid arthritis when we were growing up. She endured a lot of pain and isolation. Thankfully my parents were very cognisant of the value of organic whole foods, non-chemical cleaning and lots of love. Your blog is so informative in a kind and supportive way!

Wendy

Ms Peculiar said...

Hi Sandy,
My name is Sandi, I also have RA. I've been writing about it for several years. I would love to talk with you about your project. I am working on a book right now about RA and mental health. I call myself the RA poster child for Divas. I refuse to let it beat me...replaced joints, titanium parts and all. Keep up the great work! You never know who you are helping.
mspeculiar@comcast.net

hillarysyogapractice said...
This comment has been removed by a blog administrator.
Anonymous said...

Sandy has always been an inspiration to me in many different aspects of my life. And while we are dealing with different illness's, her knowledge, insight, and encouragement helps me and so so many others. She is a second mom to me. Keep up the good work. Sandra

Sandy said...

Thank you for all the wonderful comments and compassionate support.

We all share a chronic illness which certainly takes it's toll on us daily.
With available research and knowledge we can give our bodies what they need to stay healthy.

So, continue putting up the hard fight with proper nutrition and lifestyle changes that work for you and according to your chronic illness.

With empathy and thanks,

Sandy

'Good Health to You"

Wellescent RA Blog said...

This is very good article and surely rings true for many RA sufferers.

As the husband of a woman who has had RA for almost 8 years, I am well aware of the depression that those with RA can face due to the isolation that the condition brings. When hit by depression, my wife says she feels trapped in her life by the condition.

Despite 'proper' use of medication, she experiences flares and daily plans are never fixed. They change depending on how she feels when she gets up in the morning.

This lack of control is also a point of frustration for her in addition to the isolation that results.

While I try to keep her hopeful and boost her mood, my input can only really be minimally helpful. The hope needs to come from inside.

Medical Billing Software said...
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Maudy Grunch said...

I have been housebound and mostly bed-ridden for almost two years now. The most devastating part of my disease has been loss of human contact. Some women I thought were truly good friends have totally turned their backs on me even though I don't complain and try hard not to let my illness become the main topic of conversation. I feel crushed, rejected, angry, and unloved. I also feel embarrassed/humiliated that I ever thought these women were friends.

I live in a small community and these women have somehow made me a social pariah. I am never invited or welcome at any social events. The only thing I can do is sit at home and try to occupy myself as best I can. It's hard not to give into suicidal thoughts.

I can only say to others who are healthy and do not suffer a debilitating illness - don't forget your housebound acquaintances. Even a simple phone call, email, or short visit can keep a person going another day.

Alissia Montanez said...

This is something that I have dealt with for a long time. I am 34 yrs old and this past yr I was diagnosed with RA. I have also suffered from migraines every since I was a teen. Family just stops inviting me places and I actually have zero friends. No one in my family understands. It is very difficult to be alone. I am lucky to have a husband and two boys, so I do have those interactions. However, by the end of the day, they are all socialized out and want to veg out without any talking. I did end up getting a dog and she is very active. She is super loving and it does keep me moving around ... even when I don't want to.

Thank you so much for this post. It makes me feel like I am not so alone.

Alissia

Kimmie Sue said...

The worst part about RA is the depression and self hating. But lately finding isolation just as hard. Thanks for the insite..

Kevin said...

This is a wonderful post and, as someone with a loved one that has in the past year been diagnosed, how do we stay involved. You speak to RA sufferer and how they should find other means of companionship but that seems to only further distance the RA sufferer from those of us who love them and want, so desperately, to still be part of their life. I don't mean to make this about someone other than the RA sufferer but I don't want the answer to be "abandon those people and find other ways to find support".

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