How to get people to understand and believe our illness?

[Scout]

I'm really struggling with how much my family and some friends just refuse to acknowledge that I'm sick.

Even after hearing doctors saying I'm unwell or that I meet the criteria for diagnosis, many people in my life still always say things like "a positive attitude will fix it". 

I do believe in being as positive as possible, but it's frankly really hurting me how much they won't listen when I tell them I can't do something. They think saying "can't" is a weakness, but in reality for many of us with dysautonomia, it's about accepting reality and not making myself ourselves even more unwell. 

I tried to have a discussion with my mother about how I'm going to buy a wheelchair soon, and her response was the typical "you don't need one and stop having a victim mentality".

I just don't know what to do anymore.

It feels like I'm hitting my head against a brick wall, trying to get them to see. Sure — I realise it's hard for people to sometimes understand invisible illness, but it's depressing me deeply how much my suffering is doubted on a daily basis. I'm afraid I'm going to snap and get so angry at my family especially, and not want anything to do with them. 

Does anyone have any advice on how to move forward? 

Thanks so much. 

 

[Pistol]

Dear @Scout - I completely understand. In my case it was like that in the beginning with my family. My siblings and my in-laws felt that I must be either faking or doing something wrong.  Even today I find that people not familiar with my illness think that I should " just do more and be more active" and I would improve. What they see is a healthy looking person that is disabled - but I am not blind or paralyzed or have cancer.  So why do I mostly stay in my house, do not go to events or shopping with my daughter? --- What they do not understand is that IF we did these things we would be so very ill and most-likely end up bedridden. I have improved since getting weekly IV fluids, to the degree that I no longer have seizures and rarely faint, I feel better and have more energy, I can do chores every day.  But I still have to watch what I do and when I do it or I pay for it.

For example: on Sundays I have to choose whether I go to church or spend the afternoon with my family, I cannot do both. So people from church do not understand why I am " too sick " to come to church but can cook a meal and play monopoly that afternoon. I understand why they think that. If I went to church and spend the rest of the day in bed they would say: " I just saw her in church and she looked perfectly fine". We cannot win! --- Once I was in an airport in a wheel chair. When I came to the metal detector I stood up to go through the scanner and the scanner guy said: " If you can stand you do not need a wheel chair."  I answered dryly that if I had no wheel chair I would have a seizure and never be allowed on the plane. He just frowned. Since we look good and all body parts are functioning we must be healthy - that is the common opinion. 

I have accepted that this is how it is and no longer try to justify my illness or symptoms to others. Most people know that I have " a condition " and am disabled, that has to be enough, I do not expect them to understand. My husband, daughter and doctors know my limitations and that is good enough for me. You may not be able to convince your family that you are ill and have to use a wheel chair - but so be it. My brother and his wife think that i want attention and that that is why i use the wheel chair. I don't care. I have learned to let that attitude roll right off my back and if you can learn to ignore their comments or opinions your life will be a lot easier. Remember - if DOCTORS do not understand our illness then how cn we expect family or friends to understand it?  ---- Hang in there, Scout. If they could live in our shoes for just one day their attitude would change. Be well!

 

[TCP]

I totally get this and understand your hurt, anger and frustration. Educate them the best way that you can and show them the test results and doctor reports. I print off things on the internet, too, if I want to explain certain things. I tell them about The Spoon Theory, too, as that may give people an idea of having to choose what you do and what you cannot do. Some people will remain blinkered and deaf to your words and that is their problem, as they cannot hack you being ill and their ignorance means they aren't interested to learn. They are doing a great disservice to you by speaking and behaving in an inappropriate way towards you and if it comes from a close friend or family member it can be very hurtful. I have had to give up on many people who did not get it because they chose not to. I got the whole, 'get out and meet people', 'some fresh air will do you good, 'take up sport', 'a positive attitude would help' etc. I told them that they lack medical knowledge and I questioned what they really thought of me if they chose to disbelieve the problems that I am facing on a daily basis. I find only a few family members get me and only friends with similar problems, too. I have numerous health problems and combined they can be very hard to live with and because I am overweight from steroids and immobility, and look robust (I'm not), people think that I am fine. 

I would be very upset if my mum said that to me and I would tell her that I am disgusted that she would think that.  I got a wheelchair and I am glad that I did. Don't let her words stop you from getting one. I wish you well and don't let the dissenters get to you. 

PS I now have Secondary Adrenal Insufficiency and that can be life threatening and it's amazing that many people, including the medical profession, play that down as being nothing. 

Edited August 23, 2019 by TCP
left something out

[lieze]

I am also very frustrated with this and comments I get. At the moment I do not have the energy to try to explain my own situation but I get it.

i just feel angry and want to cry this morning.

i think my coping is running low.

i wish you the best hang in there. 

We need support just from the emotional psychological toll this all takes. I don’t know that talking changes anything though-so sad. 

[Derek1987]

23 hours ago, Scout said:

I'm really struggling with how much my family and some friends just refuse to acknowledge that I'm sick.

Even after hearing doctors saying I'm unwell or that I meet the criteria for diagnosis, many people in my life still always say things like "a positive attitude will fix it". 

I do believe in being as positive as possible, but it's frankly really hurting me how much they won't listen when I tell them I can't do something. They think saying "can't" is a weakness, but in reality for many of us with dysautonomia, it's about accepting reality and not making myself ourselves even more unwell. 

I tried to have a discussion with my mother about how I'm going to buy a wheelchair soon, and her response was the typical "you don't need one and stop having a victim mentality".

I just don't know what to do anymore.

It feels like I'm hitting my head against a brick wall, trying to get them to see. Sure — I realise it's hard for people to sometimes understand invisible illness, but it's depressing me deeply how much my suffering is doubted on a daily basis. I'm afraid I'm going to snap and get so angry at my family especially, and not want anything to do with them. 

Does anyone have any advice on how to move forward? 

Thanks so much. 

 

My moms still in denial. She thinks omega 3s will fix me with exercise. Lol. This is after i have explained the disease and how it works multiple times. I used to shower twice a day. Now its a struggle to shower daily. You arent alone in this!

 

 

[Scout]

@Pistol Thanks so much, Pistol.  Your words have really helped me have some hope! I'm so sorry to hear that you also have to put up with this, and for so long, too. So frustrating how people think we just want "attention", when, ironically — I'm someone who hates attention and hates having all eyes on me. Nothing makes me more uncomfortable. I think this is why I put off getting a mobility aid for so long: I couldn't cope with people looking at me. 

You make such a good point about how, if doctors often don't even understand our illness, then how can we expect all our family/friends too. Unfortunately it is the way it is, but we can at least hope for some empathy and understanding from them, and, like you said, if they give us a hard time: we just have to ignore their ignorant words. We know our illness and our reality better than anyone. Thank you again I really hope you're doing well!

@TCP I'm so sorry you're going through all that, and the adrenal insufficiency too, which I understand can be quite serious (baffled as to why doctors act like it's "nothing"). It's so hard not to be upset when people say things to us that are patronising and insensitive, and I'm very sorry you've experienced that too. So glad you got a wheelchair, and thank you for reminding me that we have to do what's right for us, and not worry about what others say (they have no idea what we go through). I'll definitely not let her words stop me. Will be getting the wheelchair very soon  

@lieze It absolutely is so sad how talking doesn't seem to change anything. I'm so sorry to hear you are hurting, too. It hurts me so much to know so many of us experience the same thing — having "friends" and family constantly doubt us, as well as doctors who are ignorant over our illness. My coping, too, is running very low, but I am thankful that we can all support each other here and be the support network that a lot of us don't have in our daily lives. How I wish everyone could just truly understand what we go through. Lots of well wishes your way! 

[Scout]

@Derek1987 Thanks so much Derek. And I'm so sorry your mum doesn't believe what's going on. It's so hard and hurtful when your own family does that. I know first hand. 

Showering is still a really hard one for me. My BP is still going up dangerously high in the shower (even when sitting down and using luke warm water) so I have to have sink washes. It's depressing me a lot. I miss being able to have a nice hot shower! Thankfully seeing the specialist soon so I am so hopeful of improving symptoms enough to be able to daily shower. 

[p8d]

One of two things that helped me in similar circumstances was bringing family to Dr appointments and having the Dr explain it.  My husband came with me for the first several years and my neuro NP always asked him as well as me if we have questions.  The other thing that has helped a lot is getting people to read The Dysautonomia Project book.  It has sections specifically for family/friends and another for Drs.  It helped me understand what is happening and has definitely helped my family understand.  This illness is so difficult day to day that having people doubting is just unconscionable.  I am so sorry that all of you have experienced this.  At least we have each other.

[Pistol]

@Scout - you should let your family/ friends read this thread!!!!

[Guest KiminOrlando]

I finally just told people that not passing out and feeling terrible/not being able to get out of bed for the rest of the day and possibly the next was more important to me than their opinion. It sounds rude, but so was what they were doing to me. When I showed them I was going to put my well-being over their perception of me, things changed. Maybe they still think that, but they don't say it to me any more. Learning to say no and not worry about it is a big part of this. I say no so that I can say yes to more. 

You can only control what you do. I have learned not to take on guilt or responsibility for other people's actions or thoughts. It has been liberating.  I realize this approach isn't for everyone. 

[bombsh3ll]

I honestly think that people close to us minimize our suffering as a coping mechanism for them, because it is easier to believe their loved one is lazy/weak/selfish etc than to accept that person has a life destroying illness. 

It is about prioritizing your own safety and wellbeing above their psychological discomfort. 

B xxx 

[Guest KiminOrlando]

2 hours ago, bombsh3ll said:

I honestly think that people close to us minimize our suffering as a coping mechanism for them, because it is easier to believe their loved one is lazy/weak/selfish etc than to accept that person has a life destroying illness. 

I believe this is spot on. 

My family didn't understand I was on immunosuppressants drugs and monitoring my white count. They didn't understand I was almost hospitalized because it got too low and I was staying with them during a flu outbreak so bad that they closed the schools. I was asking them not to come around me. I was staying with my parents and asked them not to go out in public unless ABSOLUTELY necessary, and that I couldn't be around my nephews because their school had been impacted and they couldn't keep the toddler's hands out of everyone's food. I was treated as being controlling and selfish. I couldn't get home fast enough. Now that we have someone with cancer in my extended family, everyone is cognizant of coming around them with even a cold. I guess it is easier to understand cancer than an autoimmune disease. 

At my worst level of pain and fatigue I could only handle the kids in short doses. I can do more now, but my parents are older and dealing with more aches and fatigue. Now they are the ones that need a break.

[Lily]

Scout, as for how to move forward, my advice depends on whether or not you share living quarters with the difficult people.  If yes, you will have to keep educating them and advocating for yourself.  If not, stop talking to them about it and just do what you need to do.  In both cases, you might be able to help yourself with some stress by deciding that they are not capable at the moment of giving you what you need (affirmation, believing you, etc.), and stop wanting it from them.

[bombsh3ll]

A kind of sad but sweet thing happened with my family regarding this the other week - 

My son has heard both my parents (separately, they have been divorced for many years) trivialize & dismiss my illness. He had a nosebleed one morning, didn't lose a lot of blood but the sight of it made him feel really faint, & he went pale & had to lie down quickly. He didn't actually pass out but came close, it really gave me a scare at the time as it is FAR worse seeing your kid go through it, but by the time we got to the hospital he was absolutely fine. 

I later heard him telling my dad how horrible fainting felt & "that's how mum feels all the time, so that's why she sits down all day". My dad has been noticeably less insensitive since. 

B xxx