A Life With Chronic Illness

[Anonymous]

On my 30th birthday, my best friend had planned this amazing trip to party in Austin. I wasn't keen on the thought of relinquishing my 20's, but she was hell bent on improving my mood with a good old bit of birthday shenanigans. A few hours later, I was curled up in bed before 9 in pain with her banging on my suite door asking me to get in the car so we could head to the club. We never made it and my bad birthday mood never improved.

This is a snapshot of my life living with chronic illness. You make plans, your body makes "other" plans. It's a life filled with pills, endless doctors visits, the financial strain, surgeries, having to plan ahead in case of emergencies, endless unsolicited advice, endless cancellations, dealing with mental health as a result of your health issues, and wanting to punch the next person that cheerfully tells you on revelation of your illness.... to just be positive!

I'm alive right? That's my consolation prize. Always having to hear, it could be worse and yeah, sure it could be, so there is that whole perspective thing but just between you and me, it totally sucks. There are moments where I think back to life before diagnosis and it's almost like a dream. You try not to go there too often and try to focus on what is and what you can do now, but you can't help but think of the before times. Again there is the perspective thing because there are those that have never even known a before time where they weren't chronically ill.

Sometimes you just need to vent (right now!) because it keeps you sane to just release the anger of "why me," but then somewhere along that train of thought you think, if not me, then who? This is my lot in life. It's going to forever be a constant battle when I'm out of remission to remember positive things and keep going forward as best I can. I have to remind myself not to always put on a brave face and to admit that sometimes I just need to go home and give my body a chance to rest even if I don't want to. It's forcing myself some days to take the pills and do the routines that keep me going. It's also knowing that there are others out there going through the same thing that continue to fight on and share with others so we don't dwell in just the misery.

To those out there, dealing with chronic illness too, kudos to you for fighting to get to the next day physically and mentally. It's not easy, and it can be the toughest struggle of your life. If you have support in your life from friends and family, never forget to say thank-you because some don't ever get that. Also don't always hold things in and know that it's 100% okay to have really bad days and to freak out, but you can't stay in that head space forever. Life is still for the living, and that's what we've got to do.

[NineBreaker]

I can relate, and I would like to add that having a chronic illness can have a lot of really bad consequences aside from the direct physical and mental toll.

And God help you if in addition to that you are your family's sole provider, or you're taking care of other people who need constant care like children, elderly relatives, or a severely ill or disabled family member.

My advice is to seek people who also have chronic illnesses for advice and support. That's because they can provide you with new information about treatment and management, and can provide a lot of empathy and support.

Also, stay away from consistently negative people. A lot of people are rather healthy, and have no idea what you're going through, but will be very sympathetic; so hold them close. Otherwise, no. Just, no. People who tell you "You don't look sick" or "Just push through it" or "It's all about mind iver matter!" should just f off. You can't just walk off a blocked artery or a missing limb. That's just stupid.

If you want to be supportive, but don't know how to do that, just ask or just be supportive. Here's an example: "Sorry to hear you're going through this. I'm here for you if you need me."

Personally, I feel like I truly understand where you're coming from. Let me tell you my story.

I'm a dentist. I was doing a hospital-based residency last year. During my last 2 months (Nov-Dec) I was preparing for the clinical board exam. There are a few of those, but basically all of them involve preforming dental procedures on live patients (fillings and a deep cleaning) and a manikin (root canal therapy and crown/bridge preps). It literally takes weeks to prepare, and literally costs thousands of dollars. These board exams are only available in limited locations and times, so if you have to retake an exam, it will take literally months and even more thousands of dollars.

Since I was going to be busy preparing for the test, I decided to take over the on-call emergency shift during Thanksgiving (Wed-Fri), since I'm preparing for the board exam and not going to be traveling anywhere. My coresidents were grateful, but no good deed goes unpunished: I got slammed during that time, and I ended up practically living in the ER. Even worse, I caught a cold during my shift.

A cold isn't a big deal, but coupled with the cold weather, it triggered my asthma symptoms It came back with a brutal vengence! I tried to push through and take the exam, but my test was terminated half-way through because I had an asthma attack in the middle of it.

Over $2500 went up in smoke! And, I can't get a dental license to get a job until I pass the exam again.

Now, I'm preparing to take it again in another location. I have to fly out 2 weeks prior to the test, and had to borrow thousands of dollars to be able to do that.

Grand total I had to borrow? More than $9,000. I need to do this to be able to get a job and start paying off my student loan (almost $500,000). No pressure.

[NineBreaker]

Anyway, I wish you the best of luck, and hope you get better soon. Feel free to message me if you need someone to talk to.

[myTake Owner]

A huge component of dealing with chronic illness is you don't actually get a choice when you're going to feel great and when you're going to be at your absolute lowest. Last year alone, I was terribly sick on Christmas, Thanksgiving, and on two of my friends birthdays. It did a fine job of sucking the happiness out of those days because I didn't even get a foot in the door to celebrate. Gosh, 9,000 dollars is rough! but you have no choice but to try to get it done asap to pay off those bills. I really really wish you the best of luck as well with your next exam. Hopefully it will go a lot smoother this time around!

[NineBreaker]

Thanks.
FYI, because of the novel coronavirus scare, the exam was canceled. 🙂 <- (dead inside)

[opnbuk59]

I know exactly how you feel and what your going through back in 2004, I woke with server knee pain just out of nowhere within a week I couldn't walk spent years being poked prodded experimented on till it was nothing left but to control the pain with drugs the very same ones demonized in the media I got off all of them felt good at first man won't lie was like oh yeah this is what it's like being mellow cool but side effects made me fell like a zombie, but people around you don't get what your experiencing you want to get up go but the pain is so excruciating you just want to lay down be left alone I feel for you I was able to walk again it took 3 years and a world of pain I would never endure again it took everything I had in me and without and pain meds it's a crime what this country did got people hooked on these prescription meds and turn around and criminalized the people who really needs it got to a point I felt like a criminal filling my meds people look at you funny was even ask by pharmacist once your not selling these meds are you just do what you can to ease your discomfort and my prayers are there to comfort you take care

[myTake Owner]

Thank you for sharing and thank you for your prayers. I understand from my friend's POV exactly what that's like. He unfortunately sleep walked off a balcony while on a vacation and broke his back and was in intense pain, got hooked to the meds, got off, but turned to alcohol to cope. It was such a vicious cycle, but I would see him sometimes when he thought no one could see, literally just doubled over in pain trying to fight back tears. People don't get how that can be someone's every single day. Most sane people would go absolutely mad with no relief from that. It was to the point where I thought to myself, I don't want you to be an alcoholic, but I get it. That's an incredibly odd thing to say or feel, but to see someone go through what you and he have, is to know life can be intensely difficult to deal with illness or pain.

[opnbuk59]

What's sad is those around you don't understand think your faking my ex never believed me never supported me cheated and in the end left me broke couldn't walk and homeless was the first time in my life don't give up don't turn to liquor or drugs it's just something else to overcome and do take care of you ever need to talk just say hi always have an ear for you

[peachyknees]

I have several chronic conditions and I totally get you. Mine are "invisible" for an outsider, you wouldn't tell there's something wrong with me, but in reality my life is full of "letting go-es", resignation and pain. I do not know what a day without pain is, and it's frustrating that the doctors aren't much of a help either.
The good side is that, believe it or not, I'm very resistant, I'm always able to fight back, I became better prepared, I have lots of medical knowledge, I can take a lot of pain and I can help others in need in case of a medical emergency :)

[myTake Owner]

You hit the nail on the head with how medically knowledable you often have to become. The truth about it is you may get a doctor, nurse, or other type of care giver who isn't up to speed on your own treatment or on research and you may literally have to walk them through how best to treat you and what you've come to know doesn't work for you even if it's what's generally done for patients. There is also that pesky bit about people not being able to see your pain and suffering. They see someone who looks perfectly healthy on the outside, but they can't see the innards of the mind and body so there can be a lot of explaining to get them on board. My own mother initially didn't believe what I was telling her about how sick I was feeling before I was diagnosed. She thought I was just being difficult. She has since profusely apologized for that because I've never been one to lie about being ill in the past but she couldn't see it and therefore couldn't believe it. You definitely sound like you're ready to keep fighting the good fight.

[MORPHEUS_12]

Reads like my life with chronic invisible illness. I have Ehlers Danlos Syndrome as well as Sjogern's Syndrome. Those are just two out of the dozens of ICD9 and ICD10 branded to my dossier. It's a hard life for sure but it is one for which I feel I was chosen for. I am strong and independent and that's what gets me through. Best wishes.

[myTake Owner]

Thank you and same to you...keep fighting the good fight. I think you have to toughen up because of what you go through and it's definitely a hard life, but committing to trying to do our best with it, is what we can do.

[PrimalInstinct]

There are many types of chronic illness and some are more insidious than others because they're not so obvious.

I've iron deficiency anemia. Severe. What does that mean? I don't possess enough iron to support healthy red blood cells. Red blood cells assist in moving oxygen around. They also remove waste & help with cell and by association organ function.

It took 22 years, numerous upper respiratory infections (e. g. pneumonia, bronchitis, etc.), 7 doctors and countless tests for asthma, the insistence of my having asthma and/or insistence to take puffers to make “clearing the airways out easier” before locating a doctor who could think outside the box & checked my iron levels.

I was never asthmatic. I never required puffers. Those infections were due to the fact anemia like this makes you more prone. I haven’t had one single severe case of upper respiratory infections in 7 years since I started taking iron supplements.

However nowadays, having used iron supplements for the last 7 years, I know immediately by physical sensations when my iron is getting low if I forget to take a day or two dosage. I get shortness of breath, I get dizzy, etc. in many ways it emulates an asthma attack or minor heart attack. It’s not nice.

And it’s less nice to think had that doctor not figured it out – anemia – I probably wouldn’t live to be 70 at the levels iron was. Severe iron defiance anemia leads to all sorts of complications when not treated properly. The most obvious is heart damage due to the strain of compensating for low oxygen levels.

[standingUP]

God bless you. I just prayed for a complete miracle for you and my best friend who is also surviving day after day with pains that you so clearly explained the mental effects. I will keep you in my prayer's. I don't know you but God does so He'll know who I'm talking about.
I may not know what you are dealing with but I understand the struggle and the mindset. My best friend is my ex fiancee. Her body brought her mind to the level of quitting everything she loves including me. I tried and fought to battle with her but she pulled away and just cannot handle any extra burdens as a relationship. No matter how loving or supportive I was she needs a miracle not a man.
I know what you are dealing with is real.
I will say reading your story you have a lot of things you see prospectively that my ex did not. So that was refreshing to reflect on. Empathize and prayers is all I can do for the suffering.
You are not alone

[myTake Owner]

I don't know your particular dating situation, but it is fairly common for relationships, even the best of them, to fail under the constraints of someone dealing with life long illness, pain, and/or debilitation. I think a lot of people think, if I were you, I would handle things a lot better when they literally have no idea. We're struggling to just get out the door every single day and that is incredibly stressful mentally and physically at times and even if someone is the absolute most loving and caring human being on the planet, I know for a lot of my friends, it absolutely is too much to have to worry about someone else---if they are happy, if they feel like they have been burdened, if they can deal with constant doctors visits and the financial aspects of it, or if they will get to a point where they just cut and run because they don't want to deal. For many, those things have happened and for others, they basically make it so by never truly letting anyone in who says they are willing to be there and stay and do whatever for that persons happiness. This is especially true if you are young because you know that that other person is going to need to deal for a really long time. I thank you for your prayers, and thank-you for being a support to someone I'm sure absolutely needed it. Perhaps they couldn't process at the time, but maybe retrospectively they will be able to and even if it didn't work out for you sadly, they may use what they learned from you to open up in the future.

[standingUP]

You have constructed your thoughts beautifully as if you and her share the same feelings and thoughts. You just process your words much better than she did.
I had figured it out long before the relationship ended that she couldn't give what she wanted as much anyway. I was willing to be there for the long haul. She knows she was loved, adored the attention, as well as the support she received from me.
So for her to just not have the energy to continue on was pretty brave. The both of you are very heroic to continue each day knowing what's ahead. I have known much weaker people.
You two have beautiful miracles ahead of you and I believe it to be sooner than later. I know God has a reason that is hard to imagine He would allow such a thing, but You will be rewarded. It is His promise. You have a beautiful soul by reaching out and sharing. Thank you for helping me understand the words in a condensed manner, lol.. Hugs Kid , prayers too...

[lightbulb27]

Well said. Hard to know what to say when someone doesn't have a solution in sight, and maybe there isn't one.

I went through some rounds of such issues at a young age 20-30 and came out the other side much better! I was lucky in both cases... one.. Dr.'s had solution for (surgery), the other... Dr.'s were useless... I had to find what was going wrong and heal. Was a journey and eye opening about the system. Drs can really suck.

I find it so odd that a young body would fail. For example.. diabetes makes no sense to me... without drugs, person would not survive. Why would a young body fail when it divides perfectly trillions of times? Just makes me think there is a change that can produce a new result, but maybe that is sometimes wishful thinking.

I wish you well in your daily life. Dis-ease is the lack of ease. Ease is what we are designed for and what you should have. I wish you good ease and health!

[myTake Owner]

There are truly some great doctors. My second specialist was amazing and really took time with me to help me understand a lot of my initial confusion and panic about my illness but I've also had aggressive, pushy, and ignorant doctors as well. Just because they went to school and put on a lab coat doesn't mean they are a great doctor, that's for sure. I fully expected things for me to start breaking down at 45 or 50 in my mind, but never in my 20's and absolutely some are born with disease and illness which I find cruel in my mind to see some young child knowing they will suffer their entire lives. I'm always happy for people like you who get solutions and answers because so many don't. Thank you so much for your good wishes. It really helps to just vent and talk about these things with people who may have a different perspective. Best health to you as well.

[theCobbler]

Amen ! You wrote novel in a few short paragraphs! I applaud You, so many take the " poor me " road , ,, I know dealing with my mother's depression for the last40 years has hardened me , but when I read this , I was almost in tears for You! I've tried to be supportive, optimistic and there for her, but she's on the " poor me " highway ! One thing I'd like to say is " be Strong & Courageous " ! You have a good grip on life , and the mental aptitude to persevere, ! Life's a real Demon sometimes, we all have our up and downs , You more so than most , ! But , You are a Survivor, , I tip my hat to you , ! God bless and keep You!

[myTake Owner]

Thank you for your kind words. I really appreciate that. Kudos to you as well for helping your mother in all the ways you can. I think we like to sometimes think that we're in our own battles alone all the time, but for the caregivers around us, they too have to learn how to deal with our care and our mental state and the doctors if they are going along with our visits.

[theCobbler]

Indeed, always remember, Doctors...
"Practice" medicine... blessed be! 😊

[Anonymous]

I totally get it. I went back to school last fall after a long break brought on by several surgeries I had from my own illness.

One month in something happened and I went without eating for a 2 months (due to my illness). Within that time period I continued school, was a maid of honor in a wedding, and danced at a festival.

I kept going and I persevered. People complimented me but every day hurt and every day I wanted to give up and cry. I didn’t have a choice. I had to keep going even though my body was giving up.

I understand people wanting to be encouraging and helpful but I honestly don’t want to hear about my illness when I’m around friends and family all the time.

[myTake Owner]

I definitely get that. When I was newly diagnosed, I had to really figure out my diet, and whenever I'd visit my parents, my dad was constantly ask me, "can you eat that, is that safe to eat, won't that make you sick" and then after dinner give me an entire file of research he had found between our visits. I finally blew up one day, and I was like, you can't keep doing this and I know you mean well, but instead of your daughter, I feel like I'm your patient and one must trust that I have some idea as an adult, how to take care of myself. Yeah.

My heart goes out to you and everyone dealing with chronic illness because as you know, life doesn't stop because you don't feel well and your number of well days may be in short supply anyway. You just have to keep going, and I applaud you for doing all that you can despite the struggles you face because it's not easy. Most people when they get sick, take a week off to recover, and they are back at it, but this is for life...one week is not going to ever cut it.

Keep fighting...

[Jay_Ni]

Yep. Chronic illnesses are a bitch, and to have one that's lesser known, has lots of stereotypes around it, and is just being looked into further in the medical world is never helpful. You almost need to do up a frequently asked questions sheet and carry it around with you so that you don't need to answer all the questions, just hand over a piece of paper 😅

[myTake Owner]

Ha, yes! I thought I should fashion business cards to hand out that way perhaps less awkward if you can just maybe read the card first before asking me the same 100 questions---yup, that would be great, thanks!

[Shamalien]

So sorry to hear this... just know that 'going out' is mostly a fking joke these days anyway, you really are not missing much, trust me, do not waste your time in regret, there is nothing to regret.

Life is a great thing though... it is a gift... when you find yourself in a situation where culture is no longer putting you through one stupid game after another, you can really make leaps and bounds in the actual game of life, progress, level up, forge an unbreakable spirit which, if developed enough, does persist

[horsenrhinounicorn]

One day some friends will make selfish decisions other friends will make selfless decisions. Those who are selfless are the friends to keep. Who will take the time to understand what you are going through to support you and make things for the better of both.

[myTake Owner]

Agreed.

[theronaldmcdonald]

Ay, chronic illness gang! I was diagnosed at 15, consequently ages 15-17 were very low for me. I was incredibly depressed and I came very close to killing myself. It was definitely, especially being so young. I felt nobody could relate to me. But I suppose I grew a lot from the experience, it’s still something to deal with on a daily basis but I’m more accustomed to the lifestyle now.

[myTake Owner]

...and welcome to the family, lol. It is always such a good feeling for me to talk to people who understand what it's like because it can be so incredibly isolating if you feel like you're alone with your illness and can lead you into very dark places. I'm glad you are still here. Repeat. I am glad you are still here with us. I think this definitely forces us to grow, adapt, and change as it affects almost all aspects of ones life. I don't know how I would have handled this at 15, so I truly applaud you for finding a way through because that could not have been easy especially when you're at that age where your life should be the easiest it will probably ever be.

[MissDawn7961]

it is hard enough to deal with pain the way it is but to have well meaning friends pushing you to get out more often makes your pain just that much worse ! forgive these well meaning people ! may God give strength to all those who have to deal with pain every day and in one way or other ! Thanks

[boredgal]

I'm sorry to hear that. I won't tell you to "stay positive" But I'll say try to stay alive for your family and friends. I can't imagine how hard it is for you. You're a strong person. Though it's hard for you to stay positive, I know that your family is doing it for you! They got your back.

[myTake Owner]

Thank-you so much for your kind words.

[lnva87]

I feel I'm on "lucky" side of these scenarios.
Rest of my life of annoying treatments and doctor visits where they ask "How are you?" and "Have you had much pain recently?"
Lucky side because appears i don't feel much pain. Though it too has its downs.
Still affects on energy levels so can't always do what i want.

Hope for best for you all.

[myTake Owner]

Well any luck is better than none! Just try to take it easy sometimes. Gotta keep reminding ourselves that we need that even if mentally we don't want to slow down and take it easy from time to time.

[Koalamate]

I try and soilder on and push myself but not tomuch sometimes you forget about the pain for a second and smile and that makes it worth it.
Sometimes being in pain somewere happy is better than in bed on the slim chance it goes away your right there to enjoy life.

[myTake Owner]

I think you always try to find the balance of how much you can simply push through when you're not at your best and those moments when it's not a good idea because you'll be worse off for it. I ignored my doctors advice about how I should workout and that did not go well but I was super determined to not let my illness get in the way, but some things are seriously out of your control no matter how much you try to trick your body into mind over matter. Definitely agree though, if you can, do as much as you can, when you can because being in bed layed up is no fun.

[Yesplease69]

Mine is more physical than mental but because it effects me everyday the mental part is definitely there. I always have to ask myself would I do this or that if I wasn't sick? If the answer is yes then I try to do it. I end up being happier because I don't feel like life is passing me by. If I can't make myself still, then I really know I couldnt do it

[mattym11]

The illness it's self is bad enough without having to go to hospital, doctor, counciling, chemists then the bloody for me nebulisers & inhalers, the tablets! Some days I just think that it I'm done. I feel your pain I really do

[myTake Owner]

I think you start to sometimes feel like an every day lab experiment and you do sometimes get into that head space where you're like, another day of this, week, hour?!? but you have to find ways to bring yourself back. Some days easier than others.

[mattym11]

Yep, just get on with it 😊

[Aiko_E_Lara]

Currently i am and it's been going on for two years now. The only thing i do now is get my mind off it. Like right now i don't remember i'm in pain unless i think about it and i can feel it going to my back of my head.

[Aiko_E_Lara]

Because i seem fine people think i'm fine but all i can do is think i am fine regardless

[myTake Owner]

Invisible chronic illness---a lot of people don't get that you can't see your insides or where the pain resides, so they call you a liar or don't believe you are as sick as you are because you aren't mmaybe throwing up, or running a fever, or turning colors. Frustrating for sure! And I can relate to the block it out of your mind situation because there are times where I'll just ask my friends to drive us anywhere and keep me distracted with music and conversation. Thankfully they know my situation and are super understanding that sometimes I just need to get out of my mind and focus on other things.

[bulletbob555]

I have a chronic illness. When you feel good do things when you feel bad dont

[myTake Owner]

That's the super condensed version of it, but sometimes not doing is not an option unfortunately.

[alance99]

I can understand your situation, i hope you get better soon 🙂🙂

[Clelland1234]

I understand your situation totally I am suffering heart attack had trouble puy pass diabetes kidneys felling on dialysis I fell like given up all the time but my family help me with my bad day and good so stay strong keep on fighting x

[myTake Owner]

@Clelland1234 Glad to hear you're getting some support so that you can keep fighting.

[arabgoddess]

Sounds like you have what I have.. Fibromyalgia?

[Theophain]

Looking good, keep it up. 🤗🤗🤗🤗🤗