What are the struggles & benefits of living with a chronic illness?

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Struggles and benefitsThe struggles of living with any chronic illness are numerous and endless. So many chronic illnesses come with various issues that might be difficult to treat, which can and does lead to SO much frustration. Through many visits to several different doctors, we are caught up in SO much medical debt, because the United States does not offer free healthcare like ALL other developed countries offer! For instance, I am required to see my MS Specialist to try slowing the progression of my illness down, but have to see another specialist to treat the pain issues! It does not make any sense to me because the pain is a direct result of the MS, so why it is my MS specialist can not treat the pain as well? Oh that’s right, because there is an opioid epidemic so anything related to pain needs to be monitored by a painchronic-pain-chain-diagram specialist who only sees me for 3-5 minutes every 2 months! Do you really think the pain doctor actually specialized in pain or they just could not hack it with being a real doctor? That might sound a little cruel as I am sure this “pain specialist” passed medical school, but seriously there are no medical schools out there that really specialize in pain!

Another struggle those of us that are living with a chronic illness faces is dealing with the dreaded insurance companies! We all know these insurance companies only see $$ dollar signs when they see our information come through! They know our medications cost a small fortune, so therefore we pad their paychecks with the many medications we are required to take. I know that my Gilenya alone without assistance would cost around $1500 a month and that is with insurance! Who can afford that on the wages we make? That’s right NO ONE can and quotes-to-inspire-people-with-chronic-illness-RM-alt-722x406therefore our conditions would worsen drastically over time! Do the insurance companies care? NOT AT ALL! I do believe that the insurance companies and government work together so they can be very well off in life without any regard for human life! Now with the talk among the government, some of us many worry that we will lose our expensive insurance in the near future. I do sincerely hope that I am wrong about this though, but that is honestly what I think is on the agenda!

Some of us may worry about the struggles of working a full-time job, as many of us probably can not afford to work part-time hours! Even if we are able to work a schedule with reduced hours this can not only be a financial burden, but also causes nonsenseYou-Dont-Look-Sick-722x406 judgments from co-workers! The comments that are made can be extremely frustrating and offensive, but we are doing all we can in life! I know that all of us would prefer to be able to tolerate full-time work, but when we are not able to we are doing the best we can and should not be looked down on! As you can probably tell I have heard the comments made about working ONLY 6 hour days, but I am pushing myself to do this!

Another struggle some of us may face is fun times with parking! Some of us may have handicap parking, which should be making our lives easier! However, some may look perfectly normal to the naked eye. We may suffer from something know as an “Invisible Illness”, which of course we feel but NO ONE sees our struggles! They may make butterflies-cant-see-their-wingsignorant comments about someone who looks completely normal parking in a handicap parking space. Rude comments have been made towards me and it did hurt my feeling terribly! But it has now been a few years since I was given the handicap parking, so I have had many experiences that I want to forget ever happened. Now days I do not allow negative comments to get to me as much and just feel sorry for the people making the ignorant comments and even worse for their children to grow up in that horrible environment because they may end up just as ignorant!

Fatigue and migraines are somethings I know many of us deal with almost daily! Both of these can be relatively difficult, but we handle them the best we can! Now I do not get migraines daily, but I get them enough to understand how hard they are to cope with.Background concept wordcloud illustration of fatigue Fatigue on the other hand I struggle with daily! I normally begin feeling much fatigue around 1:00 every day which is why I get into work earlier. For some reason, I feel much better earlier in the day and worse as the day progresses. It does not matter what time I wake up, always around 1:00 I feel like I need a nap!

OH WOW I almost forgot, I did say there were benefits to living with a chronic illness! The benefits are often very difficult to find, but they are there somewhere deep down. When living with an illness has NO cure it can make us more sympathetic, empathetic, and compassionate to what others might be dealing with at any moment in life. It may falling down is how we groweven give us the opportunity to meet others that understand our struggles and also offer support to others living with something similar! It may take work, but we are able to build strong networks with many others that can be very beneficial to all that is involved. Through the blogging community, I have been able to build powerful and valuable connections with SO many very incredible people who I have come to care so much for! I am truly thankful for all of my blogging friends and feel we might not have met if it were not for the chronic illness!

I sincerely appreciate you visiting my site today and always encourage your comments as they are fantastic! I hope y’all have a lovely day and you are feeling the best you can! Please remember that I am always sending y’all LOTS of love❤ and comfort!

My signature heart

❤Always, Alyssa❤

72 thoughts on “What are the struggles & benefits of living with a chronic illness?”

  2. I have very dear friends who experience this and while they say they’ve gotten used to it to a degree, there have been many times they’ve question continuing on. It’s heartbreaking to see ones you care about go though the day to day challenges

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  3. great post………thinking about benefits of chronic illness……..I wish I was one of those people who have wonderful things about being ill……..for me there are none. Trying to raise multiple children feeling so poorly is not something I would ever choose to do. But as I am writing this response to you Alyssa………..”meeting” all the kind sweet people who also struggle is the only good thing I can think of.

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    • I really could not agree with you more! Living with a chronic illness is very difficult and painful! I do believe the chance to meet others that understand living with a chronic illness is literally the only benefit! I think of all the wonderful people I have met because of being ill and think if I was not ill I might not have met everyone! Take care sweetie!!

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      • Aww, thank you so much for saying that! If I am being totally honest, the constant pain sucks and it drives me crazy at times, but I guess considering I do not believe it is going to go away any time soon, I just try to tolerate it! You have heard that ole’ saying, “Fake it til you make it”? That is my motto in life!!

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      • I am so thankful you understand my honesty. I completely agree….there are moments when the pain gets too much and I think that I am going to go crazy…….the pain affects my thinking and all other activities. Yes……..your saying is perfect……..fake it. I do that every day, just some days i do it better than others.

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      • I truly believe that pain changes people drastically! I think when my pain gets overwhelming high I get extremely irritated and not all that pleasant (maybe a little mean!)
        Faking it through some days is completely and totally necessary in order to stay “semi-sane”!! Please never let anyone ever tell you that off days are no required because they most certainly are!!

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      • You are so right Alyssa…….pain does change you, no matter how hard to try not to let it. I have a lot of off days………..I hope tomorrow is day that you experience smiles and peace……

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  7. I hope they don’t cut your insurance. They really need to offer free Insurance. Take care of it’s people instead of price gouging. Take care as much as possible, have a great week.

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    • Oh my goodness I really could not agree with you more! The US is the ONLY developed country that does not offer free health care to the citizens and I find it horrible! Even the expensive health care is not that great and has LARGE co-pays! I hope you have an amazing week!!!

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      • It’s a shame! When I’m elderly I think I’ll be relocating if possible. Take care and you have a great week as well!

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    • Thank you so much for sharing this Casey! I pretty much think everything Bernie wants for this country would be way better than what we have now! He is logical, whereas most other politicians are anything but logical! Even if Bernie runs in 2020, I have a feeling those idiots in charge now will try to find a way to not allow him to win!

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  9. I agree with this, especially the fatigue. Often people don’t understand that when we go home early or need a day off it’s not because we choose to and we’re going off to have fun, it’s because we’re unwell and need to rest or have a medical appointment and end up spending the rest of the day in a waiting room. My illness really is invisible. Looking at me you’d think I’m a normal girl but that makes it all the more harder.
    Love the butterfly quote by the way. It’s so beautiful.

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    • It is really sad that people would rather judge than try to understand. I definitely look completely normal and usually have an upbeat attitude, so they can’t see the real pains I deal with. I am sorry you deal with this as well. I guess looking “normal” is not a good thing, but we are who we are!
      I am glad you loved the butterfly quote! I really LOVE butterflies, so when I saw this it was beyond perfect!

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  10. One of the unfortunate issues when living in a country fueled by “capitalism”, money rules over everything in spite of the image they like to put forward… you are far stronger and a better person than they will ever be!!…
    The main thing is to press on, stay positive, follow your heart and dreams and never let go of HOPE!.. 🙂

    “No road is too long for him who advances slowly and does not hurry, and no attainment is beyond his reach who equips himself with patience to achieve it.” Jean de La Bruyere

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    • It is terribly sad the money rules everything in the country and the welfare of human life is not cared for. I always believe staying positive is the only way to live and negativity is never going to do any good for anyone!!

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    • Do you mind if I ask you a question? You do not have to answer by all means! I keep getting into heated debates with my mother because she seems to think free healthcare/socialism is terrible. You like in the UK, right? Isn’t there free healthcare there and if so is it SO terrible as it seems all the you know who supporters seem to think?

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      • Sorry for the late response!. We have national health services in UK (NHS). https://en.m.wikipedia.org/wiki/National_Health_Service_(England)
        So taxpayers have so much taken out their monthly pay which goes towards nhs contributions. We still have to pay for dentists, and prescriptions,but there are a few exemptions for prescriptions. I am not aware that there are supporters against it?. I think some try and take the you know what if they aren’t entitled to “free” healthcare. We are lucky, as I don’t have to pay for MRI scans or my DMT…but I guess I have paid in a way as I’ve always worked since I’ve been living here. I do feel for the Americans and the aussies who have to pay for such treatments. Hope thus has helpec and no more debating with your Ma!. 🙂

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      • Oh no worries! I am often late on responses, especially these last few days. It is so interesting to learn about healthcare in other countries. Our healthcare here in the states is HORRIBLE! I think that man in the white house is doing his best to make it even worse. I am glad you do not pay for MRI’s or DMT as those get SO expensive. It really amazes me how people act here in the states and other countries. I have learned so much about things in other countries and I still must say that the people in the states are insane, especially those supporting that man in the white house. I guess you can tell how much I really dislike him and the way things run here. My husband wants to move to Canada and I am finally on board with that!
        I will do my best to stop debating with her, but she is stubborn. I am going to share the link you sent with her!

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      • Do you not like the man in the Whitehouse?. I wouldn’t have guessed!. Lol. I know, I can’t imagine what it must be like living in America, but Canada sounds like a good plan!. Hope your mum likes the link, but hope it doesn’t start another heated debate!.

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      • Yeah, I am really not his biggest fan because I actually have a heart that care, whereas he doesn’t seem to!
        I have met a few people in the blogging community that live in Canada and they seem happy up there! My mother will probably tell me it is all fake news, but we will see! Her and I have heated debates mostly about that man in the white house. She might have somethings to say about the link you shared, but I am willing to deal with it. You actually make sense and live there, so you know what is true!!

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  14. Great post Alyssa. The rising cost of health care and prescriptions is absurd. I often wonder how people are surviving. With rent and rising food costs eating away at paychecks, how often do people have to make the choice between food and meds?

    Have a wonderful evening. Hope you are well.

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  15. I only pray that you or no one else allows the ignorance of others to control your life. The people at your job that talk and say things about what hours you work have no clue. They should be ashamed of themselves for they do not know what you are living with. They don’t know how you’re feeling or how it impacts your life. The people that say negative comments because you park in a handicapped parking place are also clueless. If they could only think of someone besides themselves and realize just because someone looks fine doesn’t mean they are. Those are the kind of people that don’t deserve a second thought. None of us know what the other is going through. We should all treat one another like we want to be treated. We all need to keep in mind, Karma can be our worst nightmare. All my Love & Support, Mom💜💜

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  17. This is a beautiful post! I can totally relate in weird ways. I didn’t tell you this earlier, but I have schizophrenia, and one common factor with your illness is the fatigue. I take Provigil, and you’re right about the drug companies–they really don’t want to pay for it. (I’ve had to go to battle on the phone a few times.) I greatly admire how you work six hours a day. Any coworker being snarky about that is a jerkface. I don’t work at all (aside from my writing), because the workplace will really push me over the edge, and that’s why–the judging (I guess ’cause I’m paranoid). Your words about how we all do what we can are so true. 🙂

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    • Thank you so much Meg! I am so sorry for my delayed response. During the week I am forced to get up SO early and “try” to go to bed earlier. It never works out the way I plan, but at least I try! It is amazing the similarities illnesses can have with each other. I am going to be so honest with you, I do not really know much about schizophrenia, so surely didn’t know fatigue was a common symptom. The workplace is full of judgmental and VERY ignorant people which can make it hard to stay calm. There have been numerous occasions I have lost my temper and it doesn’t do any good at all. The only reason I am pushing myself to work 6 hours is because the bills do not pay themselves and my husband has been out of work. I am working right now, but will do my best to check my blog again in a few minutes!!!

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      • Oh, that’s okay, no rush! I totally agree that the workplace is a hostile and negative and threatening environment. Losing your temper doesn’t seem so bad. I implode and self-destruct, and I think losing your temper would be far preferable!! Interestingly, I’m not certain if fatigue is common with schizophrenia, but suddenly I’m wondering. I researched fatigue independently for years and often wound up reading about MS, which is how I discovered Provigil, my prescription alertness aid. But the doctors have tested my blood for everything–and I do mean everything–and they think the fatigue is probably caused by the mental illness. This will sound weird, but I think you should keep losing your temper. (Well, sort of.) When you turn it inward, it becomes unbearable. But of course I wish your workplace were better!! 🙂

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      • I do my very best to keep my temper until control, but there are some that just know how to push me FAR too much! After that, it is just out of my hands and control!!
        Fatigue can be so darn brutal!!! My guess is fatigue can definitely be caused from mental illness. It happens to the best of us, even when we do our best to control it.
        Maybe if I continue to lose my temper people will catch on and leave me alone! All the signals are there when I start to get extremely frustrated. It is like don’t poke the sleeping bear or bad things are going to happen!

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  18. I thank God daily for this blogging community as if it weren’t for the kindness of strangers blogging and meeting at this forum, we would have never gained such true friends along the way.
    It is very sad that people are so ignorant towards others that have an unseen handicap. Heck, I walk with a cane, and I’ve been yelled at. Even the days where the pain was not so bad, I would park in a different spot just so I wouldn’t be scolded at.
    Now that I don’t have the car anymore, I don’t have to worry about it anymore. Lyft/Uber can drop or pick me up at the door, or if I’m with my roommate, she drops me off at the door.

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    • This blogging community is what helps me keep it together. I think without writing and communicating with so many great people I would lose my mind!
      It is sad there are so many ignorant people in this world and I do feel bad for them. These ignorant people do not understand our struggles, but I doubt they could handle them even for just an hour!

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  19. I just discovered your blog, and this is such a powerful message and so accurate! Health care costs are exorbitant in the US, and the judgement from others who don’t understand your illness can be crushing. I’m glad you have found a supportive online community 🙂

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    • I am thrilled you discovered my blog! I hope you continue enjoying the messages I try to send! I couldn’t agree more with you about healthcare in the US. I think prices are completely out of control. It is sad that the US is the only developed country that doesn’t offer FREE healthcare. I also agree with you how crushing the judgments of others can be. It use to bother me way more when I was first diagnosed with MS and honestly there are times it still does, but I try to be the bigger person and kill those ignorant people with kindness!!

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