Being “Not Quite Disabled”

I’m just going to pop up my super generic warning right here. I use strong language throughout this post. I’ll also include a trigger warning if you’re sensitive to body image struggles, discussions of pain and suffering, suicidal thoughts, and posts regarding disabilities. The intent of this post is not to compare myself to others. I’m not trying to lessen or undermine the struggles other people may experience. This is my personal story and because of this I will delete any and all comments that insinuate I have no right to complain because someone else has it worse. Please send me an email at RollsAndCurvesEmail@gmail.com if you’d like to have a healthy debate, but please don’t say it in the comments because it could discourage anyone else who’s suffering. This post is not a happy one. It’s not a success story. Keep that in mind. 


I am not disabled.
I am not considered disabled because I haven’t met my country’s standards in determining disability. The reason I haven’t passed these standards is because I can’t find one doctor who will take me seriously and listen to my pain, much less perform the necessary testing to find out what’s going on inside me. I stopped seeing doctors for my pain because I was tired of spending time and money on something that wasn’t going to help me. I was tired of explaining my symptoms to a brand new human being that lacked any kind of compassion and instantly branded me an addict the second they saw my piercings. I was tired of having to explain myself and find a way to ask for help from a medical professional without seeming either too disinterested or too eager. I was tired of playing the game with the system, so I gave up.


Despite not being disabled I struggle with chronic back pain, and have struggled with it for going on seven years with little relief. In addition to my back pain I have PCOS, possible endometriosis, migraines, and a slew of mental health conditions. I’m not going to pretend I have it worse than anyone else. I know there are people who would love to have my life because they live in a literal Hell. I know there are people suffering much more than I am, and I honestly don’t know how they can get through each day. I feel so much compassion for anyone that lives with a disability or chronic illness and manages to power through it with a positive attitude. They’re stronger than I can ever imagine being and I wish some of their strength would rub off on me when I read their posts.
When I was 14 years old my cousin and I were walking our dog. It was the middle of winter, and there was a ton of snow and ice on the ground. I wasn’t careful enough, and I fell on black ice. I heard a horrifying snap as my tailbone hit the pavement and I found myself unable to move for several minutes as I tried not to vomit from the pain. Eventually I was able to block it out long enough to limp home. Luckily it happened mere feet from my house. I never went to the hospital because nobody assumed it was serious. I had a nasty bruise and I was sore, but nobody thought anything of it. I wish I’d gone to the hospital at that very moment because I’ve been having back problems since then.
It started out with me being really stiff in the morning and my legs would get a little numb. It progressed to me not being able to bend a certain way. Sometimes it would flare up and I’d be in agony for weeks, but most of the time it was bearable. It was around this general time period that some events in my life caused me to suffer from severe depression and suicidal thoughts. The back pain wasn’t the top concern at the time. At age 16 I was diagnosed with scoliosis that no doctor had ever found before then. I started rapidly gaining weight during this time period (read more about it here), and found it incredibly difficult to lose weight because my body couldn’t handle exercise. I had to live a sedentary lifestyle to keep myself from being in pain, and no amount of working out would help. I used to stay after school and bust my ass in the weight room until my pain started to get worse and I had to stop.
In June of 2015 when I was 19 years old I got a job at a drugstore and expected that it would be an easy job that I could breeze through. I didn’t expect that I’d have to regularly lift extremely heavy boxes and crates, sometimes lifting them over my head. I struggled immediately and would leave work feeling extremely sore and tense, and I’d have problems getting out of bed in the morning. In late September I was offered a position overnight, which I was ecstatic to accept because I’m a night owl and personally love working third shift. Unfortunately, the lifting increased. In early October I started having extreme pain in my back that would leave me bedridden for days. Luckily, my work schedule was one week on, one week off. I figured it would leave me enough time to recover throughout the week.
I finally saw a doctor in late October after missing days of work due to back pain. She prescribed me a low dose NSAID and sent me on my way, telling me I was overreacting and exaggerating my pain. She told me to take ibuprofen and use a heating pad, and then ignored me when I told her I was already taking the maximum recommended dose for the day and could not find relief. She prescribed me an antidepressant as well, and told me that the antidepressants should help too.
Around Thanksgiving I started having problems with rupturing ovarian cysts as a result of going off my birth control prescription. You can read about that debacle here. I spoke to my doctor about the fact that my back wasn’t improving and that I had cysts. I wanted to go back on the pill while keeping my Paraguard IUD (no hormones, can be combined with birth control pills), I was turned down and was told that there was nothing she could do to help me. She refused to write me a prescription for my birth control pills and said it was “overkill” for me to double up. I didn’t realize you could overdo birth control, especially as a childfree woman, but she wasn’t having any of it. I broke down in tears and told her I would lose my job if I missed any more work. She smiled and handed me a list of gynecological providers and washed her hands of me. She knew my insurance was up at the end of the year, and that I wasn’t returning to her. She refused to treat me because she couldn’t squeeze all the money she could out of me. I was furious.
It’s now February 2, 2016. I am jobless and am being supported by my boyfriend while we live in his mother’s home. I can barely leave the house. I can barely walk on my own. I can’t put on pants by myself. Sometimes I can’t get off the toilet by myself, or even wipe my ass. I can’t shower without someone watching me in case I fall and can’t get up. I laid on the floor for four hours because I couldn’t get up off a loveseat and couldn’t be lifted because it caused me too much pain to move my spine the smallest degree. I was bedridden for a week before I was actually able to move around at all. Before then, I had to be assisted with small tasks such as sitting up in bed to eat. Even now I’m struggling with day-to-day tasks and have to force myself to get out of bed and put on clothes. I have no money to go to doctor’s appointments, and can’t work to make money until I gain my independence back.
This whole situation is bad enough on it’s own, but the thing that gets me down about it the most is the fact that nobody ever believes I’m in as much pain as I say. Any time I describe my symptoms, they’re either explained away (my weight, my breast size), belittled (you have a low pain tolerance, others have it worse), ignored (you’re not in pain, I saw you do XYZ), or insulted with a shitty “remedy” (just stretch, take an Advil, take a hot bath). Every day I’m asked if I’m still in pain, and when I say yes every time the response I get is more of annoyance rather than concern. Every single day I’m asked when I’m getting a job, and it makes me feel absolutely useless because I can’t contribute a damn thing to my household. I can’t even do household chores because I can’t carry a fucking laundry basket or stand hunched over the sink long enough to do dishes. I just feel worthless, and my issues with my health are bringing back some dangerous thoughts I used to have about myself.
Nobody understands how horrible it feels to have people ready to invalidate something that’s very real until it happens to them. The nature of having an invisible illness or condition is carrying around the burden of knowing you will never be believed by the people in your life. I’ve had people try to tell me I have no right to complain about pain because childbirth is worse. I don’t understand why every invisible illness has to be pushed away and shit on just because other people have also experienced pain. Why is childbirth considered the “gold standard” of pain, and if someone hasn’t experienced it they aren’t allowed to ever feel “real” pain?
I don’t understand how it’s acceptable to tell someone with chronic pain that their complaints aren’t valid because of an assumed “low pain tolerance.” I have multiple piercings, numerous self harm scars, and I used to practice hardcore BDSM before my condition got worse. I’ve been sexually assaulted, physically assaulted, and am a victim of domestic abuse. I survived a suicide attempt. If I say something hurts, it fucking hurts. Regardless, why is it okay to laugh at someone’s pain in an effort to feel superior to them? Why is it okay to tell a woman that she only has chronic back pain because of her large breasts, despite the fact that the pain has nothing to do with her chest at all? Why is it okay to tell someone that if they just “worked out and built up core strength” they wouldn’t feel pain? Why do people assume we haven’t tried fucking everything to make the pain stop?
I feel utterly alone right now. I know several people with chronic illnesses, but I feel like my own aren’t severe enough to commiserate with them. I’m not after pity. I don’t want anyone’s money. I just want someone to listen to me for once and understand that I’m struggling and don’t know how I’m making it to tomorrow. I’ve had the urge to self harm again because at least the pain would be on my own terms. I feel like a prisoner that’s trapped in my own body, an animal trapped in a box with no holes. I hate waking up and feeling pain before I even open my eyes to see the sunlight. I’m tired of having my own family dismiss the way I feel just because they don’t understand, while themselves babying every small inconvenience they may come across in life.
Being 20 years old and having my boyfriend assist me in the bathroom is the single most humiliating thing I’ve ever experienced. I see the way people look at me in public when I struggle to stand up straight, or when I walk with my hand on my back with a slight limp and slow pace. I can tell they’re judging me for looking like a slob because I can’t be bothered to “look nice”. I never use the motorized scooters because I know the second I do, some asshole with a smart phone will whip out their phone and post a picture of me to some fat hate website and claim that I shouldn’t be taking scooters away from “people with actual problems.”
In the United States it’s almost impossible to gain disability benefits without a detailed history. They make sure you’ve been through everything before approving you. The problem with that is when you go to several doctors for back pain, and they all refuse to do an X-ray or MRI because they automatically label you a pill popper the second they see your face. I’m not an expert on these things, but many studies and first hand accounts are showing that medical professionals take women’s pain less seriously than men’s. We’re automatically considered weak, depressed, or irrational and every complaint a woman has is laughed off and shoved aside. If you complain about soul crushing pelvic pain, they blame it on your period even though it’s nowhere near the end of your menstrual cycle. I’ve been menstruating for almost 9 years. I know what the fuck a period feels like.
I hate having to fight. I hate the feeling that I have to convince others of my pain. Whether it’s friends, family, medical professionals, or strangers in public I feel like everyone is ready to roll their eyes and act like I’m just some weakling who doesn’t know how to handle some “muscle tension.” I hate hearing the phrase “take some ibuprofen” because even Oxycodone (obtained through prescription for ovarian cyst ruptures) doesn’t take the edge off. I guess you can say this post is my way of blowing off steam before I explode.
I haven’t been posting a lot lately, and I absolutely hate being away from my blog this long. It’s been a month into the new year and I only have 2 posts up. It just adds more fuel to the “useless” fire and it gets to the point where I consider deleting my blog and all my social media profiles because I feel like I failed everyone. I don’t even know if anyone regularly reads my blog, but I still feel like I’m letting everyone down. I find it hard to sit in a chair long enough to write a post, and my body aches more the longer I sit. This is the first night since my last big flare up that I’ve actually been able to sit down and type words in a document hoping they make sense. I’ve missed so many obligations and deadlines that I just gave up.
I have some reviews coming soon, if that helps anyone. I’m reviewing the Bravissimo Alana and Bravissimo Nordic Rose, both in a 36L. I was so excited to receive them, measure them, and throw a quick write up on Bratabase but every time I try to take pictures, I end up hating them and crawling back into bed in defeat. I’m having a tremendous amount of difficulty loving my body when it’s attacking me so much. I unintentionally compare myself to the other bloggers that I read, wishing I could look more like them and live like they do. It’s not common for lingerie bloggers to write about their struggles, so it’s like the women writing the blogs I read live in a fantasy land where everyone is happy and confident.
This post is getting really long and I should probably break it off here. I just want to repeat that I’m not looking for pity or attention and I am definitely not asking anyone for money. I just want someone to hopefully read this and understand the way I feel without questioning me or making up 50 reasons why I’m just “irrational”. I want success stories from people who have made it through their illnesses and emerged on top. I want someone to tell me that it’s okay to consider myself disabled, or even temporarily disabled. I want someone to tell me that my life is worth continuing even though it’s hard to go on feeling this way. I just want to feel like these issues aren’t my fault, and that the light is at the end of the tunnel.

-Danielle

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17 thoughts on “Being “Not Quite Disabled”

  1. Lady Dickson February 2, 2016 at 3:10 pm Reply

    I am so ANGRY for you. I cannot believe health care professionals aren’t doing more to help you. Every doctor you have seen should be fired on the damn spot.

    Liked by 1 person

    • RollsAndCurves February 2, 2016 at 5:57 pm Reply

      The problem is that back pain is the top complaint that actual drug seekers will say to get pain pills. It’s extremely hard to find the cause of back pain, and it’s something that fixes itself in most cases. The DEA is cracking down on pain pills, and if a doctor prescribes them “too much” they might lose their license.

      When doctors hear someone complain about back pain, they immediately get skeptical about it. The same thing goes for female pelvic pain. They think every instance of pelvic pain is just menstrual cramps or ovulation cramps.

      I had a doctor that would slut shame me and tell me I should go to church instead of get birth control pills. I was a 15 year old virgin. He also told me I should go to church if I was depressed. He was disgusted when I was in a relationship with a woman. He would bill my appointments at a higher cost if they had to do with birth control, even though it should have been the price of a regular visit. He was a general asshole. I’ve been trying to file complaints for years now, and they constantly tell me that I don’t have proof of misconduct so they can’t do anything.

      I’m about ready to go to another country to get treatment if that’s what I have to do.

      Like

      • Lady Dickson February 2, 2016 at 6:41 pm

        Unbelievable. You should come to Canada, I’d like to think we would treat you better.

        Liked by 1 person

      • RollsAndCurves February 2, 2016 at 7:18 pm

        I’ve actually been told that numerous times. I’d love to just move to Canada one day when finances allow.

        Liked by 1 person

  2. Casey February 2, 2016 at 7:32 pm Reply

    Wow some parts of my story are so similar to yours, and I wish that someone else hadn’t gone through all of that. Being told that I just have to deal because giving me more pain meds won’t help, I’ve been told to just lose weight & exercise (when I study physical activity & actually manage more than the recommended minutes a week, usually finding creative ways to be active because of pain)….it’s a pile of bullshit honestly. If you ever want solidarity, hit me up. I actually started my blog Adventures of a Part Time Wheeler because of that “fat people on scooters/in wheelchairs” bullshit 😛

    Liked by 1 person

    • RollsAndCurves February 2, 2016 at 8:38 pm Reply

      Thank you so much. I’ll make sure to keep you in mind if I need someone to talk to. I really appreciate your offer.

      Like

  3. Keighley February 2, 2016 at 11:12 pm Reply

    I am so sorry this is happening to you, Danielle.

    Those doctors should be sacked. I’m especially angry on your behalf after reading the part where your doctor washed her hands of you when she knew you wouldn’t be able to come back.

    It’s really troubling to hear the stories of people like you who’ve been denied adequate medical care because of a perception of pill seeking. This isn’t something a patient seeking care should have to worry about – if a minority of people who do the wrong thing mean that the system fails the many patients who legitimately need pain medicines, then there’s something wrong with the system.

    I know you said you’re not writing this post to ask for money, but if you ever decide to post an Amazon list or install a PayPal donation button or anything like that, I’d be happy to help in any way I can.

    I think it’s really brave of you to continue writing personal posts like this. I enjoy your writing style and would be very sad (but completely understanding) if you decide that maintaining your blog is taking up too much of your time and energy.

    PS – if you’re looking for commiseration or a support group, I’ve heard good things about the Chronic Babe forum online.

    Liked by 1 person

    • RollsAndCurves February 2, 2016 at 11:28 pm Reply

      I agree with everything you’ve said about the medical community. It’s absolutely disgusting that they let people live with pain just because of a few bad apples.

      Thank you for your kind words and willingness to support me, but I don’t think it would be right for me to take any monetary donations from anyone. I appreciate the offer, but I’ve thought long and hard about whether or not to set up a PayPal Donate button and have decided against it. It seems to upset some people if blogs have a donation button.

      I don’t think I’ll stop writing my blog altogether, but I’m definitely noticing a lack of productivity on my end. I might try to find guest bloggers to write posts on my blog so that I can feature a wider variety of people.

      Thank you for the forum recommendation. I’ll be sure to check it out. 🙂

      Like

  4. ivy February 3, 2016 at 3:00 am Reply

    I only just found your blog via bratabase but your story made me cry . Why ? Because I have lived your story myself for the last year and half . When my Dr suggested it was my weight I thought f him and I will show him. I asked for physical therapy referral because like you no pain medication was given . My pain is / was very low back ..buttock can’t sit pain .. they call it pelvic pain .. after 2 physical therapist I do feel a little better . If you can try to apply for the state medical insurance since you are unemployed . Then a women’s physical therapist can really help . Key words to search are to see if they are similar to your story are ( pelvic pain , coccydynia, pudendal neuralgia, ) this is my diagnosis when I finally got someone to listen ..back pain is part of my whole thing . I hope this helps … there are several support groups on Facebook that helped me not end it all in a fog of pain . Trust in that you just need to find someone that will listen . Btw I thought it was hormones at first to the point of having a hysterectomy .. only got worse .. sorry for the long post ..I have never commented on any blog post ever but felt I just had too. May you find what you need .

    Liked by 1 person

    • RollsAndCurves February 3, 2016 at 3:29 am Reply

      Thank you so much for your comment. I hope I didn’t bring back any bad memories. 😦

      My pain is in the exact same place. It’s worst around my tailbone and towards my butt, and radiates up towards my bra band area and down through my legs to the point where they go numb.

      My doctors thought it was pelvic pain because of my PCOS and cyst ruptures despite the fact that my back pain has been in existence since before my cyst issues started. It’s absolutely frustrating to have everything pushed aside just because I’m a woman and suffer from woman only health conditions in addition to my back problems. It’s absolutely insulting to be prescribed antidepressants when the only reason my depression isn’t manageable is because I’m in pain. Antidepressants won’t make my back stop hurting, and they won’t take away my polycystic ovaries.

      I’m glad you’ve found a way to lessen your pain. It really does give me hope for my future. Luckily I do have health insurance and my boyfriend helps me pay for it for the time being. I’m trying to find out if I can get on medical assistance which would help me even more.

      I’ll be sure to look up the conditions you mentioned to see if any of them sound like me. If they do I’ll try to contact a doctor who specializes in women’s health. Do you have any tips of how I should communicate with doctors about my symptoms without sounding like “just a pill popper”?

      Like

      • ivy February 3, 2016 at 4:08 am

        I too have refused the antidepressants ,well took the prescription and didn’t use the pills ,then told my Dr I just didn’t like them . This website has very good tips on how to what to do while finding a good Dr in the self help section . http://www.foresttennant.com/index.html it’s a pain management information , so far I am working through the steps myself , medical cannabis if legal in your state as a topical cream is something worth exploring ..it’s legal in my state for all people . Really asking for physical therapy , topical medicine and maybe an mri if you can get one . I have yet to get my insurance to approve one but well I will say I have had better luck with my male Dr than female ones . Maybe if you describe your pain with no reference to the gyn issues that make it worse the Dr can not blame that . Or have your boyfriend go with I finally had to have my husband sit in the exam room with me to be “heard” and that still makes me mad . I too am always afraid of being looked at as a pill popper to the point of not asking for pain pills … but no one should have to live in pain . I am not the best with words and advice ..hopefully it helps ..

        Like

      • RollsAndCurves February 3, 2016 at 4:14 am

        I used to be on antidepressants a few years ago during a really difficult time, and I personally just don’t like the way they make me feel emotionally. They also cause me to have lots of side effects that I’d rather not have to deal with. :/

        I usually do bring my boyfriend with me, and I’ve even had him describe some of my issues to doctors in hopes that a man’s perspective would make my problems seem more “valid”.

        I live in a really stupid backwards state so medical marijuana is really far off for me. I’ve heard from some of my friends and relatives that it really helps chronic pain but I just don’t want to take the risk because it’s illegal and I don’t want a record.

        You’ve given me a lot of hope and tons of great advice. Thanks again. I really appreciate hearing your story.

        Like

      • ivy February 3, 2016 at 4:30 am

        Hearing other women tell their stories helped me feel Not alone and weird.. this is something no one talks about and is isolating . It should be heard these stories what you did by posting is brave. I hear you on the medical cannabis ..topical all you get is pain relief not high but society is not ready everywhere .. someday .. I never even used prior to turning 40 and this pain so don’t let people tell you that it’s not a valid pain alternative . As women life can be difficult when we a not heard .. read the guide it does explain how to diary pain so that we are heard better . And my Dr at the moment will not do pain pills but muscle relaxers he does and help , and aspercream with lidocaine works very good . Target ,Wal-Mart etc sell it ..

        Like

      • RollsAndCurves February 4, 2016 at 1:43 am

        I agree that more women should tell their stories. It might help to lift the stigma of women’s pain if we speak out or even publicly shame the doctors that have failed us.

        Unfortunately Aspercreme and related products didn’t help me at all. If anything it irritated my skin a little bit. 😦

        Like

  5. cece February 4, 2016 at 8:28 am Reply

    I’ve been searching for someone in the same bra range of me and love your reviews. Then I came across this and my heart just sank for you, seriously. I don’t know what state you’re in, but if it’s the south I’m sorry. Where I live this happens to so many people and partially because of the drug seekers but also because of the negligent doctors. It’s a shame and the main reason I refuse to go to any of them here. Have you had a cat scan or xray done? Have you seen a physical therapist? Just some options if you haven’t tried yet.

    Like

    • RollsAndCurves February 5, 2016 at 5:02 am Reply

      I actually live up north in the Northeast US!! A lot of people don’t believe me when I tell them that.

      I haven’t done any of those things because my ass-backwards insurance company requires referrals for everything and I can’t get the referrals without a doctor that believes me. It’s a vicious cycle.

      Like

  6. Fighting Against Fat Shaming – DrBraLove February 4, 2016 at 11:32 am Reply

    […] discussion on how someone is Doing Health Wrong unless you are their doctor – and even then, doctors get it wrong (sometimes really wrong).  Even if the person telling you to do something differently is your doctor, you have the right to […]

    Like

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