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Forums > Smalltalk > Question for the Invisible Illness Warriors on RPR

Most people on RPR don't know me. I tend to keep to myself for the most part, but occasionally add a comment to a conversation here and there. (The joys of being shy.)

But, that isn't the topic of this post.

For the past 9 months, I've been dealing with a frustrating medical mystery that, only earlier this week, finally had a confirmed diagnosis.

I have multiple sclerosis. Specifically, RRMS, or Relapsing-Remitting MS. To save people on a google search, it pretty much means my body is attacking the protective sheath of my nerve cells. It causes damage to the brain and the spinal cord, resulting in scarring (lesions) that can cause loss of sensation, blindness, and mobility issues, among other things. It is one of many kinds of auto immune diseases. If I am lucky, it won't get worse and it was caught early. But it will never go away.

And that is.. hard to accept. Knowing that this chronic disease is something I need to live with, that it has no cure and can only be managed. I've spent a lot of time in tears over this.. mess, for lack of better vernacular.

So my question for others in the community dealing with invisible illnesses and chronic diseases.. do any of you have suggestions, advice, tips, on how to accept a change like this? On how to move forward with day to day things? On how to handle people who might not understand or believe something is wrong with you? Or just.. how to not let your thoughts jump out of control, because god knows that's a problem for me lately.

Right now, I look normal. I go to work, I put on a smile, I laugh. But I don't feel normal. I'm exhausted. I'd be lying if I said I wasn't depressed all the time. And for all the time I spend writing... I feel like I don't have the words to explain what is wrong with me.

I feel lost. Any suggestions or help would be appreciated.

Since I was 3 I've suffered from juvenile rheumatoid arthritis, where the body attacks joints. I'm improving now, but in the past I was very depressed thanks to this diagnosis. Kids thought I was just a truant who had fun all day when I missed school, said mean things like why I'm still there, but in the end I knew most of these people weren't truly cruel. Just unknowing, and judging based on something they didn't understand. They didn't realize how much I would suffer emotionally and physically on a regular basis. Those that did understand, were the ones that stayed kind.

While I was in remission for years, it recently cropped back up, and I too am struggling to deal with it. But I know every day I continue on, I'm strong. Not everyone knows what people have to go through, but it's okay because you know and you persevere. People that love you and know will likely cheer you on. You may feel weak, but every day that passes proves our might.... Gosh I might sound quite corny lol.

I can definitely appreciate corny. Thank you for the encouraging words. <3

As someone who deals with medical things that no one can see, my biggest piece of advice is to be kind to yourself.

There are going to be ups and downs, but you need to remember that you're sick. Your body cannot keep up with the life of someone who is 100% healthy and that's really frustrating and hard. But if you don't take care of yourself, you can't be there for others. It's hard not to do the comparisons to others, especially when it feels like everyone around you is doing everything so effortlessly. They're not you. And you can only do your best that you're able to do.

There are going to be some really great days and some really bad days. Take things one day at a time, that's all you can really do. Have patience with yourself and don't feel guilty if you're unable to do something one day, you can try to do it another day when you're feeling stronger.

Also, there was a time where I was really embarrassed and ashamed of my medical condition(s) to the point where I refused to talk about it. You shouldn't feel like you should have to hide what you're going through if it might make someone else uncomfortable. This is your life, what you're going through and dealing with, you have the right to share it with who you want.

Remember all the feelings you're feeling are valid, and it's okay to scream and cry and throw things around if that's what you want to do. Everyone copes differently and there's no right or wrong for how you approach this.

as someone who has a parent with MS (progressive-relapsing) in the later stages, i'd like to give you some advice specific to MS - a lot of this stuff wasn't common knowledge until it was too late, as the available options in the early 2000s were much smaller due to a lack of research and time to produce medication. now, however, the diagnosis of MS is much less bleak! if you start on treatment early and stick to it, your prognosis is looking much better than it was twenty-some years ago.

1) VITAMIN D. literally cannot stress this enough. if you aren't on 50,000 units a week or more already, get on it ASAP. researchers aren't really sure why, but keeping a healthy level of vitamin D in your system helps to slow or prevent the worsening of MS symptoms. and even better for you, vitamin D supplements work the best for the relapsing-remitting type. it might seem like it's just 'placebo', but literally anything you can do to slow progress, do it.

2) exercise, exercise, EXERCISE!! let's face it: the last thing you want to do with MS is exercise, but it's one of the best things you can do. it prevents muscle wasting (this easily becomes an issue the less active you are), it keeps your body healthy, and overall it gets you into a routine that'll get you up and moving each day. it doesn't have to be much: a twenty minute walk everyday is enough - in fact, it's better that you don't do anything too heavy! aerobic exercises are just fine. but please, do your best to stay on your feet and moving. it'll improve your balance, help alleviate muscle spasms, and it can prevent you losing strength in your muscles. it's easier to maintain it than it is to lose it and try to gain it back again.

your doctor may recommend physical therapy if you start to suffer from muscle-specific issues, and if they do, i highly recommend you start it. seriously; a little bit of pain and boredom is nothing when it means maintaining your mobility for the years to come.

3) find a treatment plan that works!! if there's nothing else of this advice that you want to take, take this. this is literally the most crucial step to keeping MS from progressing, and to living a healthy, normal life. obviously, you probably can't afford STEM cell treatments or whatever - and that's okay! infusion options are readily available now, and they perform extremely well even in late stage MS patients. it depends on which medication you choose to go on, but most are covered by a good portion of insurances and only require a once-a-month appointment that takes around an hour.

there's also injectables and oral medications, if you're early enough, which i believe you are. they're called beta interferons and glatiramer acetate, both which work on your nervous system. i don't know much about them, however, as they weren't readily available at the time of my mother's diagnosis.

overall, if you haven't already done it, your next step should be finding a permanent neurologist that'll stay with you. they'll know what's best for you, and overtime, they'll be able to adjust your treatment plan to your specific needs; if you're changing doctors every few months, this can be very hard to accomplish. find a specialist if insurance will cover it! some hospitals will even do charity funding for expenses. just ask!

4) watch your temperature. with MS, you're going to be prone to being unable to sweat, which means you're going to overheat extremely quickly. this is going to be dangerous, and if you're not careful, prolonged exposure to heat can cause heat stroke or even cause an episode/relapse. take frequent breaks, drink plenty of water, and try to avoid staying out in the sun for too long. if this becomes a problem for you, ask your doctor about medical cooling devices made specifically for MS - if you think you can't afford one, there's plenty of jimmyrigs online you can try. ;)

5) avoid stress, AND SLEEP GOOD. stress and a lack of sleep will, like heat, worsen your symptoms. get those good 8 hours of sleep a night, and if you suffer from insomnia, ask your doctor about available medications that'll help you get your rest - it's more important than ever! obviously, stress isn't something you can do a whole lot about, but try your hardest to manage it, even if that means picking up a new hobby, seeing a therapist, meditation...whatever works best for you.

6) don't be afraid to take a step back when the going gets rough. it's okay to get upset, stressed, or even depressed over your diagnosis; having a chronic, invisible illness is life changing. but always remember: you are allowed to take time to yourself, because your health and wellbeing comes before anything else. take care of your body and your mind, give it what it needs. cry if you need to. rant a little bit! consider looking into support groups for people with MS or invisible disabilities, there's plenty to go around.

i wish the absolute best for you; i know that coming to terms with your diagnosis is going to be a long journey, but that doesn't mean you have to be alone for it. if you ever have any questions regarding MS/disability/literally whatever, my inbox is open to you. <3

Just off the top of my head from a lifetime of living with (a fairly different) invisible illness...

Take advantage of provided accomodations; don't try to not single yourself out by not taking advantage of them. This is a lesson I re-learn over and over again.

Advocate for yourself; if you are supposed to receive an accomodation and you don't, let someone know.

Be gentle with yourself; it is OKAY to mourn the loss of the life you expected to have. It is okay to be frustrated and to cry for as long as you need to.

When you can, focus on what you still CAN do rather than dwelling on what you can't -- look for what is still good and places you can still be happy in your new normal.

If you're having a one-off interaction with someone, it is okay to name a different disease that they likely understand better in order to more smoothly get the accomodations that you need. For example, sometimes I have to ask people to stop whistling so long as I am obliged to share a room with them (stuck in an elevator together, in the DMV and can't leave until my paperwork is stamped, etc.). I usually tell them this is because it gives me migraines, because this is a condition everyone readily understands, generally admits is real, and is happy to help out with without needing a long explanation of what my actual condition and symptoms are; I got the accomodation I needed to not collapse into a non-functioning mess for hours or days, they got to feel like they helped someone with a Real Thing without getting a whole lecture on conditions they either don't know about or picture very differently. The symptoms are similar enough in the short term that it's a reasonable enough explanation.

The most important lesson I had to learn is accepting that it's okay to not be okay.

Too many people think that happiness and being carefree is about just being positive enough, and if you feel bad, limited, or as Kim said mourn the loss of your previous life, it's seen as weak and negative. But this is catharsis! We need to acknowledge our bad feelings and give our brains a chance to process them. For me, this means I have days where I absolutely wallow in self-pity and just cry and cry, because life feels unfair and limiting and why me?

But then... after I cry, I sleep or just rest. I'll be tired, drained, but I felt my feelings and now that I'm done crying, it gives me the chance to deal with whatever got me into that state. By normalizing that I have bad days, the bad days are easier to deal with and I open the door to figure out how I can prevent things from getting so bad.

If you get stuck in the positivity trap, you end up robbing yourself of the chance to cope well. Bad days are part of life, they're not a negative reflection on you. You can't will the unpleasant facts of your life away, and you shouldn't be expected to. It's always okay to not be okay. There will be days where you are more than okay, too, but the bad days don't invalidate those or your worth as a person, ever.

It's so much easier for me to deal with my bad periods and days now, thanks to this, and I can only recommend giving yourself this mental room to feel things and work with them, rather than suppress them. There is some amazing advice in this thread and I wish you all the best to grab this sucker by the horns and make the most of it. :)

Like others have said, it really is okay not to be okay. I can be okay for one or two weeks at a time, and other times my condition flares many times in a single morning. I still have to practice what I preach, and by this, I mean just remind myself that it's okay to take the needed rest before continuing on. It takes time to accept the limitations that you had never expected to face, but with time and support, it's possible.

I won't lie, there will always be days when someone makes little of your situation only because it is invisible. The things total strangers have said to me is absolutely mind-boggling. While you can always open a dialogue about your situation whenever you wish, please remember that it is not your sole job to educate people, either. You're not a walking pamphlet. ❤

Stay strong, chika! You got this.

@Nineforalostgod - I really appreciate the insight. Particularly regarding Vitamin D and heat. Low Vitamin D levels is something I've always struggled with, but it was never mentioned in prior neurology exams that it was a risk factor. I don't think they even checked those levels, it was my PCP that did and they were the ones to get me on a supplement.

The heat bit.. makes me really frustrated. I work in a screen print facility, and.. generally it gets really hot because of the industrial dryer and all the heat presses we have on at various times. I really enjoy the job, I enjoy the people I work with. But I've definitely noticed that the hotter it is, the worse I feel over the course of the day. And the idea that I might have to leave it because it's just bad for my health kills me. I'll definitely look into cooling devices, see if that helps at all.

Far as treatment plan goes, I've got a consult appointment coming up that will hopefully get me on one. I just wish they weren't so expensive. Infusion options are definitely high on the list, but it ultimately comes down to what my insurance will cover and if there are any help programs I can get into that can offer any kind of assistance. Hopefully I'll be able to get those answers tomorrow now that the holiday weekend is over.

Thank you, everyone. ;-;

It's definitely an understatement, how hard it is not to compare yourself to someone else. Or just to who you were in the past. I look back to when I was in high school, and I recall being super active, playing in the marching band, taking martial arts classes. I can't even recall when that loss of energy happened, but it did and it just progressively got worse. There's a part of me that wishes I'd thought to bring it up sooner, maybe all this would have been caught even earlier.

I really appreciate the reminders to not fall into that mental trap. And the reminders to just take things a day at a time. I know I've got a bad habit of thinking the worst of a situation and.. ultimately, making myself worried for nothing. Which never helps.

I'm really grateful for the kind words and help. So thank you all again.

I have chronic pain and illness myself, for the last... 8-9 years and the biggest thing I can say from what I have learned is probably super cheesy but important regardless - tell people. Don't let yourself get stuck in a trap of not telling the people around you how you are feeling because you don't want to burden them. You're not a burden, and it gets very stressful not sharing with others when you're struggling <3

I’ve been dealing with both chronic disease and invisible illnesses, but I’m not going to specify what (it makes me uncomfortable and I don’t think it’s necessary here)

Moving forward with day to day things, take it in smaller proportions. Maybe things take longer for you or crave more of your energy; allowing yourself to give more time to those tasks so you don’t feel like you have to do everything at once. Allow yourself to rest; if you don’t need it physically, it’s still a good idea to take a small mental break sometimes. Dealing with illness and disease can take up a lot of your energy and thoughts, which is very understandable. If you feel comfortable, talk about it. Maybe to a friend, a family member or somebody – vent, as much as you need. You’re allowed to think it’s hard and feel sorry for yourself because it is very hard

With that said, there will be a time where you get used to that your life has changed. I know it’s possible to feel like you’ll struggle with accepting it forever but at some point, you’ll slowly start to accept that this is what your life looks like now. Even if isn’t good and you struggle to find the good things, it can help to seek out things than can make your life easier or at least more comfortable

Write your thoughts down; maybe keep a journal where you just write down everything you want to. Or record yourself saying it on your phone. It’s not about having it to look back at later (though you by all means can do that, too) but more for you to get all of your frustrations out because some things about an illness you may want to keep to yourself for a bit
If people don’t understand or believe what you say, educate them. It doesn’t hurt and you can really do it and still be kind toward them. If they say something that hurts you, you’re allowed to say “hey, when you say *this* it really hurts me and I would appreciate if you didn’t say it in the future” or something along the lines of that. You can go as deep as you want into educating them about your condition

If you have the opportunity to see a therapist, psychologist I would recommend to seek out one and talk to them; maybe they will able to help you. Asking the people who gave you a diagnose might also help, in case they can refer you to somebody who has experience in talking with clients who deal with the same things as you
Best of luck!

It has taken me some time to really bring myself up to answer this thread, because even though I do have chronic illnesses and a degenerative disease, it is very hard for me to accept the fact that I can be in pain and that my pain is actually valid. Having read through a good chunk of these responses I've built the courage to come out with it myself.

I suffer from chronic ear infections from my inner ears being too small. The wind blowing in my ear, a long shower, wearing earbuds, sleeping on one side for too long, even just muggy humid air, and air pressure changes can cause my inner ears to become severely infected or severely inflamed. Due to how often this happens I have found myself ignoring the pain almost entirely, tolerating it at points where I should probably see someone about it, and only going to the doctor about it when I reach my own personal threshold for pain. This is not something I recommend for anyone who's going through chronic illnesses or pains, because this has landed me in some crappy situations where the pain is prolonged instead of being dealt with before it became worse.

I've dealt with my inner ear pains or so long that there was an incident where I spoke with a doctor after I reached my threshold. The doctor seemed horrifically alarmed that I hadn't bothered coming in sooner and was only rating my pain scale at about a 7 when most people would have been in the ER screaming with how bad the infection had gotten inside my ear. Nothing of my infections can really be seen on the outside at all, though sometimes I do get a little bit of drainage.

The second invisible disease I inherited from my mothers side of the family is degenerative disc disease. The discs in my back are slowly deteriorating and falling apart. This causes a lot of back pain, bad posture, can lead to scoliosis, can lead to osteoarthritis of the spine, and also reduces my ability to sit, stand, lay still, and walk for any length of time. Chiropractic care is beneficial to me, but it will not make the problem go away. At 23 I was told that my upper back and neck look to be as degenerated as someone in their 70s, my tail bone area belongs to someone in their 50s, and the middle of my back was the closest to my own age at 30 to 40.

You would think there would be things that could prevent, stop, or alter the course at which this disease takes place but unfortunately it is not treated immediately like a disease for most people. Due to degeneration in spinal discs being a common factor of age, most people who have it are looked over and told to start exercising or just "stretch more." Originally when I was taken to the ER concerning my back pain I was told "you're fine. just stretch more." I wasn't told why I was in pain, what could actually be causing it, and I wasn't even given anything for the pain. I was sent home to "deal with it."

Only a couple weeks later I found a program with a chiropractor and went through their office and through another doctor to finally reach the diagnosis, be told that it wasn't curable, but we could slow it down, and that this was something I was going to have to fight through for the rest of my life. If it becomes bad enough I could require surgery, but so far I've come up with several pain management strategies for myself, but there are days where I cannot get out of bed or I have to lay in strange positions or the floor and cry it out until medications can kick in.


Like most others on this thread I have to say... remember that you're allowed to be in pain and that your pain is valid. You're allowed to have days where life absolutely sucks, you don't want to do anything, and you can cry it out. Also remember that if anyone ever tells you "well there are people who have it worse" just tell them to go suck and egg. Your pain is your pain and it is just as valid as anyone else's pain out there. It doesn't matter where your pain tolerance stops, because no one is in your body to feel how you feel. It is okay to say "I'm hurting today."

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Forums > Smalltalk > Question for the Invisible Illness Warriors on RPR