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Posted 1/10/2017 2:07 AM (GMT 0)
I started having symptoms of what I now know is Interstitial Cystitis, Endometriosis and Pelvic Floor Dysfunction four years ago. One day everything was fine, the next I woke up crying and could not get out of bed by myself.

My parents still think I am making my illnesses up for attention even though I have shown them proof so many times. Hello! I'm 22 not 3. I don't want their pity or attention like they think. I want understanding but all they see is the troubled kid I once was looking for their attention again. Just because I look fine on the outside does not mean my body isn't trying to destroy me from the inside out! I can be in a ton of pain and still have a half smile on my face. My illness has made me so much stronger than I was four years ago. My mom told me that she knows I am faking because I can be fine one minute then suddenly I am in pain. I have the same problem with most people I meet or when I run into an old friend. "You put on makeup and did your hair, you must be feeling better" "You never look like you are in pain so you must be faking."
mad
Posted 1/10/2017 1:44 PM (GMT 0)
Yeah, I get the "You don't 'look' disabled." stuff all the time. Especially from family.

At least I can come here, where folks just 'know'. We can't see each other, but it's a comfort to me. Even though our symptoms don't match, the understanding and compassion I've found here are such a huge help to me.

We're on the same boat, just on different decks.
Posted 1/10/2017 4:11 PM (GMT 0)
I think almost all of here will identify with the frustration of being "assessed" by family and friends by our outward appearance. "You don't look sick?," is a common pronouncement.

Let's face it, most illnesses and conditions are invisible.

Diabetes. You cannot "see" diabetes, per say. Any number of endocrine conditions are invisible.

I have Addison's disease. It is not a disorder that people can see in me in my outward appearance - except for the rosy colored cheeks and rounded face owing to the use of steroids. In many instances, the steroids that I take to reign in low cortisol symptoms of Addison's have the net effect of making me look healthier.

Chron's disease. You cannot see the intestinal inflammation that wrecks havoc on those who have inflammatory bowel disease. Nor can you see their surgical scars. Nor can you see a possible ostomy that they may sport on their abdomen.

Epilepsy and seizure disorders. Autism. Any number of cancers. The vase majority of auto-immune conditions. Not easily seen.

I do empathize with you. It is hard to have people around you devaluate your experience.

I encourage you to Google "The Spoon Theory." It is a resourceful analogy that uses ordinary dining spoons to give meaning to what it means to life with a life-affecting chronic illness. "The Spoon Theory" is an analogy easily understood by those who are well in body and spirit and can shed sensitivity on the deeper challenges of living with chronic illness.

In my 20+ years of fragile health, the best advice that I can give you is to keep who you are as a person separate from your illness with interstitial colitis. You are not your illness, and your illness does not define you. Keep working on developing aspects of yourself separate and apart from interstitial colitis - become engaged and involved in an avocation or hobby; return to school and earn a new degree or immerse yourself in a new area of learning simply for the joy of learning; find a means of exercise that you can participate in and enjoy - the benefits of exercise on pain reduction are many and add in effect to other treatments or medications that you may be offered.

And, certainly, come here. Come here to find your voice and to be among people who will validate your experience. Pain can be an immensely isolating experience. With the internet and this forum, you are only a click away from inclusion with individuals who share a common misfortune of ongoing pain.

We are here for you.
- Karen -
Posted 1/11/2017 1:47 AM (GMT 0)
Same here - this forum has been wonderful in supporting those of us who experience this..

12+ years now, w/numerous (visual) tests that clearly show injuries, in addition to nerve tests, exams doctors, physical therapists, etc. Workman's comp case so attorneys also became involved & eventually Even they agreed injuries & pain, fibro, fatigue, nerve damage, etc prevented me from being able to work.

From the beginning I Sent links to family & friends w/information about my health issues. Asked others to accompany me to medical appointments.. Were around me when I had procedures, surgeries, etc. these were All good suggestions that I found here.
Some read & understood.
& Cared.

But Closed minds ARE just that. Closed.

Still - still! To this day Some family members & friends doubt what they cannot see..... But they no longer even try to discuss it w/me.. They have learned, finally.

Yes, like you, partly because I do have periods of less debilitation .. Once I was on the correct treatment plan I was actually able to smile & occasionally enjoy life. .. Took about 6 YEARS. Still have weeks, sometimes months when I can barely get out of bed.

And, When I push myself I more often than not end up w/so much pain.. Well you know.

(Seashell)/ Karen post is great !! She listed some of the many diseases / conditions that most likely I -we! - would not be doubted. If I wore numerous braces, used wheelchair, - somethings that are visible reminders, maybe it would different. But I don't (yet) & may never.

My personal outlook got better for me when I finally admitted to myself something others on here had talked about:
I can not change how anyone thinks, except for myself.

So I stopped trying. Refused to engage in any discussions that I know are not meant to educate, that is just begun to try to trick me into admitting I was faking. To antagonize me.. Why anyone who is suppose to care about me, wants to hurt me is beyond my understanding.

Most importantly - I quit caring what anyone else thinks.. The stress of my struggle was making me so unhappy & sicker..

Let Others make themselves miserable. Or happy. Leave me out of it. I SPEND MUCH LESS TIME WITH/around the doubters. If someone WANTS to make you feel bad about your health issues, that speaks to their character. NOT yours.

If a friend treated you badly you would stop being friends. We are raised to stand by your family & I do still love my family members who doubt me but I do not spend a lot of time with them.

My quality of life has gotten better. BETTER.

Whatever you do, DNS, I wish you the very best.
Posted 1/11/2017 4:03 PM (GMT 0)
Great Post, Diane.

For those who are well and able-bodied, they cannot personally reference what it is to live with a chronic health condition.

You cannot ask to receive from others what they themselves to do have to give.

I have learned that it is best not to discuss my health related issues with family or friends beyond what the most basic and essential. As Diane mentioned, I have less internal stress when keeping discussions about my health to a minimum.

This is where forums, such as HealingWell, serve a a vital role. Forums allow people to connect and relate to other people who share a common experience. To be accepted and validated. And to process thoughts and feelings in a safe harbor. It is all about people helping people.
- Karen -
Posted 1/11/2017 10:38 PM (GMT 0)
There are many times in the four years since having symptoms where part of me wants to tell everyone to just go away if they won't support me but at the same time I want to educate them and try and get them to understand even though I know there is no point. I just feel...stuck
Posted 1/11/2017 11:21 PM (GMT 0)
There's only so much hearing of our pain or diseases that friends and relatives can tolerate. I am guilty of sometimes not wanting to hear more from my relatives too. It's a normal reaction unless it's over-the-top.

Don't try to "educate" friends and relatives. That makes it worse. Follow DianeB's lead and stop caring what they think. Come to the forum where you can let it out, and maybe even get some good suggestions. Don't tell them to go away, be as pleasant as you can, but I would avoid those who say mean things.

Best wishes!
Posted 1/14/2017 10:21 AM (GMT 0)
It is a lot easier said than done but you're right. I just can't seem to do it. They are family.
Posted 1/14/2017 3:32 PM (GMT 0)
Dangerouslynormalspoonie:

Do take the time to Google "The Spoon Theory." It is an insightful and informative analogy of living with a chronic illness that is easily understood by healthy family and friends.

I agree with everyone here . . . do not force feed educating your family about your health woes.

Your health, and lack of, has ripple effects and ramifications on your family. Your health issues impact your family members, in ways that you may not see or comprehend. Some of the "push-back" from your family may be in response to a perception that your message delivery is overly self-oriented. Loss of health of one member of a family affects the entire family. Be open to recognizing how your health impacts those around you.

Come here to find a safe harbor to vent or express jumbled or conflicting emotions. Living with chronic health requires working on one's emotional health and stability, constantly adapting and adjusting. Sometimes crying when one needs to release despair and discouragement. And then picking up the pieces.

I sense that you want some degree of validation from your family for your current identified health constraints . . . as a means of repairing possible past interactions with family where you may have strained relationships.

To wit: "Maybe I wasn't really sick before when I sought attention, but I am really sick now and I want/expect you to acknowledge it." If this is your course direction, I would urge you to temper your delivery and expectations.

Everyone has health issues. Some more serious than others. For the most part, almost everyone has some sort of health speed bump that they contend with.

Be both courteous and giving of respect and validation and a listening ear to others . . . just as you are wanting these qualities for yourself from others.

I have lived with compromised health for 25+ years. Your insights into yourself and to your relationships with others will mature with time. Chronic health is the great equalizer.

Bottom Line: Be gracious and understanding to those around you, just as you want those around you to be gracious and understanding of you and your health challenges. It is less about you individually and more about you and the people around you collectively who bring meaning to your life.
- Karen -
Posted 1/14/2017 8:20 PM (GMT 0)

(Seashell) said...
Dangerouslynormalspoonie:

Do take the time to Google "The Spoon Theory." It is an insightful and informative analogy of living with a chronic illness that is easily understood by healthy family and friends.

I agree with everyone here . . . do not force feed educating your family about your health woes.

Your health, and lack of, has ripple effects and ramifications on your family. Your health issues impact your family members, in ways that you may not see or comprehend. Some of the "push-back" from your family may be in response to a perception that your message delivery is overly self-oriented. Loss of health of one member of a family affects the entire family. Be open to recognizing how your health impacts those around you.

Come here to find a safe harbor to vent or express jumbled or conflicting emotions. Living with chronic health requires working on one's emotional health and stability, constantly adapting and adjusting. Sometimes crying when one needs to release despair and discouragement. And then picking up the pieces.

I sense that you want some degree of validation from your family for your current identified health constraints . . . as a means of repairing possible past interactions with family where you may have strained relationships.

To wit: "Maybe I wasn't really sick before when I sought attention, but I am really sick now and I want/expect you to acknowledge it." If this is your course direction, I would urge you to temper your delivery and expectations.

Everyone has health issues. Some more serious than others. For the most part, almost everyone has some sort of health speed bump that they contend with.

Be both courteous and giving of respect and validation and a listening ear to others . . . just as you are wanting these qualities for yourself from others.

I have lived with compromised health for 25+ years. Your insights into yourself and to your relationships with others will mature with time. Chronic health is the great equalizer.

Bottom Line: Be gracious and understanding to those around you, just as you want those around you to be gracious and understanding of you and your health challenges. It is less about you individually and more about you and the people around you collectively who bring meaning to your life.
- Karen -

Thank you, Karen for your insights. My family and I have always had a strained relationship for many reasons, most of which consists of me being a "problem child" and being sent to live with my grandparents at the age of 10 till 17 when I moved back in with them for my Senior year. They seem to still see me as the troubled kid who now is 22, married to someone they don't like and is "disabled" when I look fine on the outside.

You're right. I am looking for validation about my illness as well as wanting their support as I go through surgeries, tests, procedures and everything. I guess I have always wanted to know that they care but it seems like I need to have a life threatening or "Visible" illness for them to even believe or talk to me. I am deeply hurt and embarrassed by their lack of support and conversations about how I was "fine" when I lived with them for my senior year" and suddenly I am moving out, graduating, marrying someone they don't approve of and all of the sudden one day I am "sick and disabled"

They say things like "talk to me when your cured or ready to admit your faking your illness" and it hurts my heart. I don't expect them to believe me anymore, I have pretty much given up on trying to prove it to them but a little support would be nice!

As for the Spoon Theory, I have read it so many times and have used it with family and friends to help them understand, but I think they just don't get it.

I am just...stuck in this hole and not sure how to get out. I am having Botox surgery for my IC at the end of the month and all I got back in response to telling my family was "I will have to take your word for it"
Posted 1/14/2017 10:18 PM (GMT 0)
So sorry to read about your situation. Just know that this happens more than you could ever imagine. Do not be embarrassed by their lack of understanding, thats their problem not yours, let them deal with it.

Keep in mind most 22 yr olds are out living their life as they should be as healthy individuals. A friend your age is not going to understand your situation because they cannot relate to it. Most people do not want to hear about other people's medical issues. Never let your health be the topic of any conversation.

Take care.
Posted 1/15/2017 5:00 AM (GMT 0)
DangerouslyNormalSpoonie:
It think it would benefit you to know that my family, particularly my mother, is less than supporting of me with my range of diagnoses.

I have had fragile health for 20+ years. I "pushed through" and went to graduate school, had an engaging career, ran marathon distances - all while knowing that my shadow of poor health was chasing me. I hit a metaphorical health wall 6 years ago and have been sidelined since.

All to say . . . I empathize and understand the deep pain and hurt of not being supported by family.

For years, I was the caretaker of my brother (diagnosed with epilepsy and later with a malignant brain tumor) and my father. And yet no one in my family will do for me what I have done for others.

I have come to learn that you cannot expect others to give you that they do not have themselves to give.

Seek and find a small cohort of friends who will support you. If not friends, think of gaining companionship in a pet (dog, cat, hamster) who can provide you with unconditional love. I have a tea-cup Maltese, Molly, who means the world to me. Connect with your church or ministry.

Invest in reading, escape to new worlds through books. Find distraction through cross word puzzles or jig saw puzzles or word games. Subscribe to NetFlix and become engrossed in a comedy or drama DVD.

Always be gentle with yourself. Be true to yourself. And you will find your way through chronic health.
- Karen -
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