Have you ever felt like you were not allowed to get better?

[DizzyPopcorn]

Hi,

Just like the title says, have you ever felt like you were not allowed to get better, for fear of people not believing you afterwards?

I have this fear right now where i think that if i show that i'm having a good day and i'm asymtomatic, people will stop believing me long term. It's hard to explain...

Do you feel remotely like this sometimes?

[MomtoGiuliana]

It's typical for symptoms to wax and wane.  Especially once a patient starts improving.  Many chronic conditions can follow that pattern.

Are you worried about people believing you because at times you need help or understanding from them?  All you can do is share information with loved ones and your doctors--and others who you wish to share information with.  If you have a diagnosis of course that helps.  It is hard for people who have never experience significant chronic illness to understand what it is like or what disability is like.

[DizzyPopcorn]

31 minutes ago, MomtoGiuliana said:

Are you worried about people believing you because at times you need help or understanding from them?

Yes, exactly this.

Its like... If i stop "complaining" or talking about it, people will chalk it up to just being "in my head" and that in the end, it never existed.

[merkat30]

Yes !! Ooh u looking well u all better....no it just good make up ! Ppl dont seem to get just cause u can do one thing u can do it all time ..it frustrating isnt it . U must be better cause u try hard be normal tday then when u need the help they dont belive it as bad as u say .

[Mistri_The_Squirrel]

Yes.

If I have too many good days in a row, then I must be okay now, right?

Unfortunately, I can't stay well for a full month. 

 

[WinterSown]

There are some online POTS forums where it seems their tone is more about who has the most symptoms, the biggest pillbox and the worst non-understanding friends. These places are about keeping you down in the dregs with the worst of them. Avoid these forums because they're not about getting better. This forum here, DINET's forum, is quite the opposite, we're all about encouraging people to get better; meds, exercise, the right foods and personal disciplines can bring about an amazing change. 

If you are worried friends will treat you negatively because you are making a winning effort to get better then you need new friends. Dump anyone who disses you for not staying down and in despair, physically and mentally. You must rise above their words. 

 

[Pistol]

I totally felt like this before!!! I went through the  -unfortunately common - time when no one knew what was wrong with me and most cardiologists thought this to be a minor issue - despite the fact that I became increasingly disabled by my symptoms. Sometimes I would start a new med or treatment and improve for a while ( or just felt good for a week or so ) and then I felt two things: 1: thank god, maybe it is all over and I can have my life back!! and 2: what if it is all over and then everyone will think I made this all up? What you feel is completely normal and because of the reaction of the medical community/ people in our lives that do not know what we endure is real we have to constantly doubt ourselves. But we here - on this forum - we know what it is like and there is always someone who has the same experience. Please do not feel like you have to be visibly ill - enjoy the times you feel good and do not overdo it in those times. They are precious days and if you believe the people who feel you can function like a "normal person" you will probably get bad again quicker.   

 

[RecipeForDisaster]

This reminds me of several months ago when I was finally on all the meds I'm on now, minus the saline.... I had a 5 day time where I wasn't well enough to eat and was very weak, nauseous, and wobbly, BUT I hadn't completely passed out since starting all of the meds. I was having quite a bad day and tired of trying to force myself to eat when i wasn't up to it. The cardiologist said "glad you're doing better ". ??? Not passing out is not removing my whole issue, people!!

[WinterSown]

1 hour ago, RecipeForDisaster said:

This reminds me of several months ago when I was finally on all the meds I'm on now, minus the saline.... I had a 5 day time where I wasn't well enough to eat and was very weak, nauseous, and wobbly, BUT I hadn't completely passed out since starting all of the meds. I was having quite a bad day and tired of trying to force myself to eat when i wasn't up to it. The cardiologist said "glad you're doing better ". ??? Not passing out is not removing my whole issue, people!!

'Glad you're doing better.' means just that. It doesn't mean 'Hallelujah! You're cured!!!'

I saw two different cardiologists yesterday and heard the same from both of them and I GLOWED when they said it because it means they noticed I'm trying to get better. Doctors like when they physically see you are following their advice or by some miracle (other than them) you are improved. It doesn't mean you're out the door and gone from them forever. It doesn't mean that you won't feel like crap ever again and it doesn't mean you are cured.  Usually it means they see you're strong enough and can begin another stage of care to get your life back on track again. 

 

 

[Pistol]

@WinterSown - this is so true! My docs all have seen me on my worst days and they know what a bad day is like because of it. So when I see one of them and I say I am doing good - well, then they celebrate that with me. If I come in the office in a Wheel chair and close to having seizures or syncope - well, then they just get me IV's. By now I have learned that there is no guarantee that my good days continue - I just enjoy them ( like when you baked a cake ). If I have another good day the next day - whoohoo!!! If the next day is a crash-day: oh well, it was nice while it lasted. I am no longer thinking that good days equal a cure - they just are gifts to be cherished!!!! 

[bunny]

Whether it be cancer, dysautonomia, or even the victim of a crime, it's important not to let that identify you.  Your identity hasn't (shouldn't) change.   I'm not say it's easy, especially when you have people doubting you, but ignore them the best you can and continue being YOURSELF.   I can sympathize -- I was severely anorexic at one point in my life, down to a BMI of 11.  Even with the doctors telling my parents that I was deathly sick, my parents still refused to believe I was anorexic and refused to get me help.  It's been 20+ years and they still refuse to acknowledge that I was anorexic. 

Many years ago I worked at a major cancer hospital.  The patients who got caught up in the cancer diagnosis generally didn't do well.  Those who refused to let it change them generally thrived.   Even severity of the cancer didn't seem to mean as much as the patient's ability to maintain their personality in spite of it.  I saw patients with Stage 3s walk out the door.  I saw patients with Stage 1-2s sometimes leave through the back door in a white van.  

[DizzyPopcorn]

7 minutes ago, bunny said:

Many years ago I worked at a major cancer hospital.  The patients who got caught up in the cancer diagnosis generally didn't do well.  Those who refused to let it change them generally thrived.   Even severity of the cancer didn't seem to mean as much as the patient's ability to maintain their personality in spite of it.  I saw patients with Stage 3s walk out the door.  I saw patients with Stage 1-2s sometimes leave through the back door in a white van. 

 

So their attitude changed how fast their cancer progressed? Whether they let themselves be defeated or not by the disease?

[DizzyPopcorn]

19 minutes ago, bunny said:

I was severely anorexic at one point in my life, down to a BMI of 11.  Even with the doctors telling my parents that I was deathly sick, my parents still refused to believe I was anorexic and refused to get me help.  It's been 20+ years and they still refuse to acknowledge that I was anorexic. 

This must has been hard, i'm sorry your parents dismissed your condition

[WinterSown]

4 hours ago, whoami said:

 

So their attitude changed how fast their cancer progressed? Whether they let themselves be defeated or not by the disease?

It depends on the individual--that's what it's all about. You remaining you. And not letting dysautonomia or the negative social side-effect, like your life careening out of control, change who you are as a person. It's been almost fifteen months since my diagnosis but two weeks ago my  MIL was questioning which doctors gave me that diagnosis!!! Obviously, that was about her and not me. Oftentimes, no--a lot more than often; it's pretty much every single time someone bugs you, questions you, snoots at you--they are trying to make you think you are less than you say you are. It is all about them. Take a moment and consider the emotional weakness of person who has to bolster themselves by attacking someone they know has a confirmed diagnosis; they know you are ill but you are an easy mark to them until you stop them.  I would not let my MIL get the upperhand. I had my facts and I was able to tell her she was questioning two cardiologists (she sees one of their partners) and several other of her/my doctors including our primary who I started seeing on her recommendation. In other words, I whipped out everyone's credentials and beat her over her head with them--well, verbally of course, and I was polite because she's 90 (I am 60 and she's been POed at me for nearly 40 of them. hehehe). She didn't get her jollies--she looked so sad too 😞 You have paid a ton of money for your medical documentation, whip it out in conversation when you need it. As situation warrants, you can be more or less polite when you tell someone that your personal life is your own--they usually get the hint, if not then ignore them. 

 

[DizzyPopcorn]

Thank you very much for those advices :). I will remember them.

[MomtoGiuliana]

I agree--share credible information with people (who you feel should know about your condition).  If they cannot accept it, you just have to do your best to move forward regardless.  I think mindfulness, or whatever you would want to call it, can be helpful too.  Jon Kabat_Zinn has some great writing on this in terms of coping with challenges like chronic illness.

[WinterSown]

3 hours ago, whoami said:

Thank you very much for those advices :). I will remember them.

 I hope you feel better soon--heart, mind, body and soul. 

[yogini]

POTS is complicated, but I think if you told someone your symptoms are much better on some days than others they might understand that part.  There are so many common illnesses - migraines, allergies, asthma, acid reflux - that don't act up every day.   This is no different.

But also agree with the others to limit the discussion to as needed, with trusted people.  

[bunny]

12 hours ago, whoami said:

 

So their attitude changed how fast their cancer progressed? Whether they let themselves be defeated or not by the disease?

Indeed, the patient's mindset definitely affects their physical diseases.    Think of it as the companion to the well-documented placebo effect.   If you think a medical procedure is going to be miserable and have a poor outcome, it's more likely to end up that way.    That's not to say that there aren't limits to this.   When you're in the end stages and have multiple organs failing, there's only so much a positive attitude can do.  At the same time, I've seen amazing turnarounds happen, myself included. 

If you spend time around people in the end stages of life, on hospital wards, or in hospice, you pick up on the signs.  When someone's convinced themselves that they're going to die / they have nothing left to live for, that's it.  It may take a couple of years, but their health will decline more rapidly than a normal person of their age. 

[RecipeForDisaster]

@WinterSown maybe my story was confusing-I don't mind at all celebrating with doctors when I'm having a good day-during this particular visit i was doing much worse than usual an drew having a very hard time getting through almost a week without being able to eat, with no help for that. If my baseline was a 5/10 I was at an 8/10. Yes, I wasn't on the floor, but suffering a ton and not able to do anything. So to say "glad you're doing better" when overall I was doing a lot worse...

[WinterSown]

@RecipeForDisaster Any day you are not on the floor is a very good day. Doctors see us in fifteen minute segments which you hope they remember as well as you do. Were you better than the visit before? If so, the doctor was very sincere in saying 'glad you're doing better'. Be happy s/he remembered or maybe they didn't and only have their chart notes to go on . You appeared better than your previous visit. #celebrate #smallwins

 

 

[RecipeForDisaster]

I was doing worse in the office than my previous. My BP was actually lower too. To me not much is worse than going around with very low BP unsteady on my feet and not able to eat or sleep... I'd actually rather have some times where I'm on the floor than a solid five day period of this. I was miserable. Believe me, I celebrate being able to walk a quarter mile more than I could before... little wins! But this day was a fail.

[DizzyPopcorn]

Is there a dysautonomia day in canada? Where one can go on marches and help make dysautonomia more understood?
 

Say i'm found with no pots and something else and i feel fine after treatment. I do not want to forget what it "felt" like to have that illness or a possibility of it. As such, i'd like to bring awareness to the cause and help research in that field, especially since my mom had CRPS for 15 years until her death.

[MomtoGiuliana]

October is Dysautonomia Awareness Month.  I assume this is international.  Many different groups do events that month to raise awareness.

Many people with POTS do recover to a high level of function.  It can take time.  For many of us relapses occur, but there can be times between where we feel pretty well.

[WinterSown]

#whoami

There are regional events in October. Hubs and I attended one in Niagara last fall, we met with others for a lovely dinner and watched the falls turn turquoise for Dysautonomia Awareness. I think they will be illuminated again this year, I have not heard otherwise. There are other events in Canada or right across the border in the states. We drove up from Long Island but other families had traveled as far from other states--I know some drove from other states and provinces. Worth the trip because Niagara does not disappoint.