chronically invisible

i maybe have me/cfs and/or fibromyalgia and/or lyme disease and/or common variable immune deficiency and/or pots, i don't really know anymore, doctors keep telling me different things. i just wanna offer support to people dealing with similar conditions and help out wherever i can. 27, they/them, nsw, australia

[chronicallyinvisible]

Is it possible to have too many chronic illnesses? My mom sometimes says no one can have as many problems as I do and that's just about the depression I have. Currently I have 7 chronic illnesses and there's about 3-4 more that I could have. I feel like such a fake when I say that because who has that many problems. Add in self diagnosis(for some, others took ages in a doctors office) and it's a really invalidating feeling. (Also who would believe I wasn't faking cause self dx?)

note: i’m so sorry for taking so long to reply to the messages in my inbox, i’m trying to catch up on them now, but i’m aware some of them are months if not years old.

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lol no, that’s an absurd and horrible thing for your mum to say! i would say most people with chronic illnesses suffer from at least 2 or 3 different conditions, if not more. i personally have at least 6 or 7 different diagnoses. it’s absolutely not your fault that many chronic illnesses go hand in hand with one another, and that there’s a lot of crossover in chronic illness symptoms. i hope your mum has become a little more supportive

[chronicallyinvisible]

Hello, I'm 16 and I've been feeling chronic fatigue since I was 14, after coming out of the hospital being treated for psychiatry issues. I've been showing the symptoms for CFS/ME but I'm not 100% sure if I have it. I'm chronically tired, have chronic headaches (a new type and pattern, but I've had headaches for years) loss of appetite, no energy, brain fog, etc. I was prescribed antidepressants for my headaches. Should I mention this to my doctor? And will my illness get worse?

note: i’m so sorry for taking so long to reply to the messages in my inbox, i’m trying to catch up on them now, but i’m aware some of them are months if not years old.

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i think this message is quite old, but you absolutely should mention those symptoms to your doctor! it’s very hard to say whether any chronic illness will get better or worse over time, but it’s my experience that ME/CFS constantly fluctuates. for a lot of people it does get worse over time, but it can also just plateau.

[chronicallyinvisible]

Hi. when i was a kid my mom died and my family was accusing me of it. It was a really hard time for me-self harm+depression. 8 years later Ive got pain/difficulty walking/fevers/cough/infections. Nothing and no one helped. My family was starting to believe me when I got high cancer markers-I was in hospital for long time but they havent found anything. I´ve tried a lot of things. Im on antidepressants again and Im afraid that once I´ll stop taking them theyll stop believing me.

note: i’m so sorry for taking so long to reply to the messages in my inbox, i’m trying to catch up on them now, but i’m aware some of them are months if not years old.

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i’m sorry you’ve had such a difficult time with your family and your health, i really hope you’ve since gotten some answers and more support.

[chronicallyinvisible]

Hi I've been having a hard time with the holidays and just been having a bad day Some members of my family don't really understand my illness and it's just upsetting hard having to deal with especially some of the question about my future and school.

note: i’m so sorry for taking so long to reply to the messages in my inbox, i’m trying to catch up on them now, but i’m aware some of them are months if not years old.

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i’m really sorry being around your family during the holidays is triggering for you, i hope you were able to practice some self-care and be around some more understanding/supportive people.

[chronicallyinvisible]

I'm very nervous because I've been in chronic pain and had ongoing symptoms (including night fevers & swollen glands) but the Dr only did blood work and only found veey mild but D deficiency even tho I lost 21 pounds in 2 months (and still losing it)

note: i’m so sorry for taking so long to reply to the messages in my inbox, i’m trying to catch up on them now, but i’m aware some of them are months if not years old.

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i really hope you’ve since gotten some more solid answers xo

[chronicallyinvisible]

I know there must be a line out there where someone can bring up my illness without me getting upset, but it's always in a derogatory way, or suggesting that there might be a better treatment out there for CVID someday. I hate false hope, and I hate it when people think they have any idea of what I'm going through and then act like my illness is no big deal when I try to explain my life to them. "Too young o be tired". "At least the treatment is only once a week".

note: i’m so sorry for taking so long to reply to the messages in my inbox, i’m trying to catch up on them now, but i’m aware some of them are months if not years old.

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i have CVID too and i understand completely where you’re coming from. it’s exhausting to constantly feel dismissed, discouraged and misunderstood. i really hope a treatment helps you one day soon.

[chronicallyinvisible]

Do friends ever "disown" you for your illness? If so, how do you deal with that? Because right now, it's got me feeling pretty rubbish :/ thanks, sorry.

note: i’m so sorry for taking so long to reply to the messages in my inbox, i’m trying to catch up on them now, but i’m aware some of them are months if not years old.

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i’m so sorry you’ve had a friend abandon you because of your health. i have been ‘disowned’ by a close friend once and it was extremely hurtful and confusing. ultimately you have to realise that they’re being incredibly unreasonable and that their behaviour shows a complete lack of compassion or understanding. even though it hurts like hell, you probably don’t want a person like that in your life because they’re likely never going to understand your health issues and you’ll constantly feel like you’re walking on eggshells with them. you should never have to repeatedly apologise to a friend for being sick.

[chronicallyinvisible]

Sorry if these are questions you have already asked. How old were you when you were diagnosed? And what prompted you to seek help/medical advice? Did you initially think that you were just excessively tired to due lack of sleep, unbalanced lifestyle etc?

note: i’m so sorry for taking so long to reply to the messages in my inbox, i’m trying to catch up on them now, but i’m aware some of them are months if not years old.

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i was 13 when i was first diagnosed (incorrectly). i sought help because i went from being a very active, happy child to being bed-bound and miserable, and i knew something was seriously wrong.

[chronicallyinvisible]

I have severe IBS but I feel like it's inappropriate for me to call myself chronically ill or a spoonie because IBS is so common and for most people it is not debilitating like it is for me. I know that technically because I am often bedridden and usually don't have the energy to take care of myself I "qualify" as chronically ill but a part of me feels apprehensive about claiming that term for myself. What do you think?

note: i’m so sorry for taking so long to reply to the messages in my inbox, i’m trying to catch up on them now, but i’m aware some of them are months if not years old.

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i think if you feel like it applies to you and if it is a very debilitating aspect of your life you should be within your rights to call yourself chronically ill.

[chronicallyinvisible]

I never really know if I should be welcomed onto illness/spoonie blogs because everything I have is mental rather than physical? I never know if having the combination of anxiety, depression, dermatophagia and mild breathing problems is enough? I know I certainly relate to spoon theory but I don't know if it is just for chronically ill people or if I could use it too?

note: i’m so sorry for taking so long to reply to the messages in my inbox, i’m trying to catch up on them now, but i’m aware some of them are months if not years old.

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i personally believe that mental illness is applicable to the spoon theory. i know there are some people who disagree, but it’s really up for you to decide if it’s relevant to you.

[chronicallyinvisible]

I'm having a lot of trouble lately with siblings who don't really believe i'm ill (even though thanks to M.E. i'm mostly bedbound). They often say I'm too defensive when talking with them about my illness (there have been a lot of arguments about that), or that i should just get over it and get on with life. I've tried explaining things but it usually makes things worse. My brother also basically said i'm a burden on my parents, who look after me. I don't know what to do. Do you have any advice?

note: i’m so sorry for taking so long to reply to the messages in my inbox, i’m trying to catch up on them now, but i’m aware some of them are months if not years old.

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i hope your relationship with your family has gotten a little better. in those situations i feel like it’s vital to lean on friends and other supports as much as possible. as hard as it is, you have to keep reminding yourself that you’re not a burden and that you are extremely ill. you’re not expecting anything unreasonable and it’s not your fault that you’re sick.

[chronicallyinvisible]

How do/did you handle/handled the anger and grief that comes with a chronic illness? I have ME and I always get so angry and sad when I have a flair or arent able to do the things that I want. I cry when I have to use my wheelchair to even come outside, when I havent been to school for 8 days, when I cant help my boyfriend with the dishes (or anything really). I hate my illness, I hate it so much. I take this anger out on myself which makes it much worse.

note: i’m so sorry for taking so long to reply to the messages in my inbox, i’m trying to catch up on them now, but i’m aware some of them are months if not years old.

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honestly these days i just let myself be angry and/or sad because i know it will eventually pass, and i think anger and sadness are 100% reasonable reactions to being chronically ill. what i mean by that is, i don’t think you should try to stop yourself from being sad or angry because you’re experiencing an extremely traumatising thing and anger/fear/sadness are very normal reactions to trauma. you can’t be expected to just accept it and move on, you’re always going to jump back and forth between anger, guilt, sadness, denial, acceptance.

[chronicallyinvisible]

when you’re so depressed that you have to completely exhaust yourself before going to bed because you know that lying there trying to sleep without any distraction will literally be torture

[chronicallyinvisible]

executive dysfunction be like

me: okay, it’s time to do the thing

brain: we have to wait

me: wait for what?

brain: something

me: what though?

brain: we just have to wait

me: okay, but why?

brain: we have to wait

me: wait for WHAT

brain: i dunno but it’s something

[chronicallyinvisible]

friendly reminder that you don’t have to be in a good mood for the holidays, you don’t have to be excited for the holidays, you don’t have to pretend that you’re not struggling. chronic illness doesn’t go away just because you’re meant to be celebrating. you’re allowed to feel like shit.

[chronicallyinvisible]

fatigue is: never being able to wake up at a reasonable time no matter how hard you try and hating yourself for it because you just physicallly cannot force your eyes open and no amount of alarms or early nights or fail-safes or tricks make any difference

[chronicallyinvisible]

a message that i think doctors need to hear:

not every treatment is right for every person

not every treatment will work for every person

some treatments will make some people sicker

understand that most chronically ill are extremely familiar with their bodies and their symptoms

understand that we are trusting you with our wellbeing and that places us in a very vulnerable position

understand that your actions can have major consequences in our lives

understand that you can do us immense harm

understand that we are not your guinea pigs