Posts tagged chronic illness
Posts tagged chronic illness
When I see this picture I can see how exhausted I am.
I can see that I hurt.
I can see the dark circles and bags under my eyes.
I can see the unwashed, tangled, hair.
I can see my first wrinkles.
I can also see what a damn FIGHTER I am.
I can see the half-smile.
The determination to push through and find humor and positivity.
I can see that I look different now, but I can see that being battle-worn is nothing to be ashamed of.
I am strong. I am brave. I am still beautiful.
It took becoming disabled and very sick for me to learn to love my body.
That may sound strange, but I learned the hard way that hating and attacking myself was counter-productive.
2011 was a rough year for me. My health was failing, my physical abilities were diminishing, my life was turned upside down, and every instinct inside of me was screaming self-destruction. I tried to end my life in January of 2012, after about a year of waging war with my newly disabled body. The moment I woke up from the coma I realized I had to change.
Everything had to change.
I changed the way I talked to myself, I changed patterns of hateful thoughts, I changed the way I expressed myself in my relationships, I changed the way I approached my conditions, I changed the way I looked at health and beauty and worthiness.
I started treating myself with gentleness and patience. I began to approach my sick and crippled body with love and concern.
Since the suicide attempt, my health has only gotten worse. I am now looking at a diagnosis of a serious and degenerative brain disorder, which means that my life is going to continue to change and my body is going to continue to fail.
This also means that I have to work even harder to love and accept myself.
My journey is not over, it never will be, but I am SO grateful for all that I have learned this past year. Especially for the amazing Stop Hating Your Body community, and how you have encouraged and inspired me along the way.
Thank you for your support, and for the incredible work you are all doing on your own paths to self acceptance.
Stay strong, lovelies!
This is the body of a 21 year old woman with an invisible illness/disability called Cystic Fibrosis.
Since I was a child I have struggled with depression, self harm, anxiety, and my disease. I began cutting myself when I was 11 years old and am now a month clean of it, the longest I’ve gone since I was 11 was a whole 6 months. I’ve never felt normal or good enough. I didn’t start growing boobs until I was about 15/16 and didn’t have a waist until just this past year. I’ve always felt uncomfortable in my own skin. For a long time I thought I was should have been a born a boy.
My periods are exceedingly irregular because of the fact that I am -usually- malnourished, and once I went an entire 7 months without a period. In addition to that, because I am always on antibiotics I have chronic yeast infections. It’s gotten to the point where I sometimes wish I didn’t have a vagina, I just cry and scream in pain from the yeast infections. And I often feel as though I’m not good enough for my boyfriend because he could find some normal healthy girl who didn’t have these problems and could actually regularly have sex with him. My disease causes bloating in the abdominal region, and there has been numerous times people have asked me when I was due (as in they thought I was having a baby) because of the bloating of my stomach. Many people with Cystic Fibrosis, including myself are what they call barrel chested, which means your rib cage is a bit more round than others, which has always caused me to wear over shirts and hoodies to hide it.
I have also a port a cath in the right wall of my chest that people always assume is some sort of deformity, because society thinks only people with cancer have port a caths.
This picture I’m showing you is the first one I’ve ever seen of my body that I was happy with. I am 4’10”, and t the time of this picture, I was at a really low weight for myself of 97 lbs. I’m now up to a much healthier 120, and I’m having a really hard time looking at my body in the mirror again, because it just doesn’t seem to look right to me, I know it was an unhealthy weight, but I was finally happy with what my body physically looked like.
But my main reason for posting this is that THIS is what an invisible illness/disability can look like and that I think a woman with an invisible illness can be both attractive and sexy, regardless of what society tells them. I look like an average everday run of the mill person (well mostly). But there are days I can’t get out of bed, shower, do anything. I have to take MANY MANY medications and treatments each day to keep my lungs, pancreas, and liver working. There are days where I can’t get dressed on my own because my hands are so swollen and painful I cry when I try to move them.
This is me. This is the body God gave me. And I’m proud of it, flaws and all. It may not be a perfect body, and I may want to just give up because of all the struggles it gives me sometimes, but I’m learning to love it. A year ago I’d never publicly talk about my disease like this, let alone show a picture of my body like this. Tumblr, The CF community on here and Stop Hating Your Body have been big factors in my increased self confidence. So thank you! And I hope this helped someone else with similar body image issues.
And if you want to learn more about Cystic Fibrosis, check out CFF.ORG or my health blog at prettyclavicles.blogspot.com
I just want to write a quick note to introduce myself again, and to thank all of you for the warm welcome I have received!
You have been so kind, and have made my first few weeks on the “job” a breeze. :)
(my primary blog, which I never use, is WheelieintheKitchen, so any likes, replies, or follows show up under that name, FYI)
I am a full time student, majoring in social work and political science, and my husband and I run a little Etsy shop, The Paper Poppy Store.
I live in Utah with my husband of almost 2 years, my service dog, Cash puppy, a chihuahua, and 3 cats!
I have been disabled since July of 2010, and started WheelieWifee one year ago in an attempt to find some support in dealing with the major life changes that followed my injury.
StopHatingYourBody was the FIRST blog I followed, and Amber was the first person who followed me. This site has helped me SO much in my journey, I am absolutely delighted to be a part of it now!
Please let me know if you have any questions, or just stop by to introduce yourself! I am excited to get to know each of you:
Maintaining positive body image with disability, chronic illness, and chronic pain
Body positivity is especially difficult when your body is not a healthy one.
When you spend every moment fighting pain, struggling with basic tasks, and rearranging your life around your limitations, it can seem impossible to think of your body as anything but an enemy. Acceptance probably seems far-fetched, and love surely sounds like a joke; however, I’ve learned that it is crucial.
I spent the first eighteen months after my disabling accident desperately trying to cope with the changes in my body, and my initial focus was solely on recovery. I focused on research, diagnoses, treatment, and cures, and when none of the professionals could help me I slipped into despair. I had placed every single one of my metaphorical eggs into the “basket” of healing, and when I continued to decline I became completely lost.
It was not until I shifted my focus from healing my ailments to healing the relationship with my body that I found peace.
The journey is different for everyone, but I am going to share a few of the things I had success with along the way:
- Accept Your Body (in it’s current state, limitations and all!)
I am a very visual learner, and so for me this took a very concrete form. I created an art journal where I utilized many art therapy techniques which I learned in eating disorder recovery in my early twenties. I drew pictures of myself with exaggerated positives and negatives and I made collages about pain and disability. I wrote lists. Lists of things I was still physically capable of, lists of (reasonable) goals, lists of strengths, lists of positive things and things I love. I also wrote letters. Letters of love to my younger self, letters of apology to my disordered self, letters of recognition and appreciation to my current body.
For you this process may be less visible, but it is just as important. Unresolved conflict, grief, anger, and self-hatred cause internal turmoil and interfere with the goal of self-love. Attempt to identify where you have nagging, negative, emotions and figure out a way that works for you to resolve them.
- Accept Your Disability
This is similar to the first one, but different in that the goal is to focus on your limitations. As strange as that may sound, it is a vital step.
When I stopped obsessing over getting “better” I was able to make life so much more livable. Accepting the label of “disabled” actually opened many doors for me, because it enabled me to recognize my restrictions and then work around them to empower myself!
It is very difficult to sort our accommodations until you know acknowledge that you need them.
Instead of fighting your body, learn to listen to it and figure out what is needed to increase your quality of life.
This Valentine’s Day, love your sick and disabled body, and watch as it changes your entire world.
Part 2 will discuss beauty and hygiene, and Part 3 will go more into relationships. Let me know if you’d like me to add a topic!
This is Stacy!
Stacy’s been a member of SHYB for a long time, and among the posts she’s submitted, she’s also provided some incredible art for SHYB as well! She’s a gorgeous individual inside and out and she has a lot to bring to the table, we’re SO happy to have her on board!
Here’s some background on Stacy in her own words!
“The world of body image struggles began very early for me; I was self-injuring at only 7 years old, and was in full blown ED mode by age 12. I spent 6 months in an eating disorder treatment hospital when I was 19, and I’ve spent the following 8 years working diligently to heal the broken bonds between my body and me. I made great progress, and have been fully recovered from Anorexia and Bulimia for more than 6 years, and I have not cut myself in almost 4.
In 2010 I was in a car accident which resulted in a variety of permanent injuries, including herniated disks, severe nerve damage, torn ligaments, trauma-induced fibromyalgia, and even more that is still undiagnosed. During the last 2 years I’ve continued to decline, and a result I now spend almost all of my time in a wheelchair. When I lost my health it felt like I lost everything; from big things like my career, my health, and my mobility, to more unmeasurable things like my wardrobe, my respect, and my confidence. It felt like I lost all the ground I had gained through my ED recovery, and I was right back to loathing my body. I became extremely depressed, and attempted suicide in January 2012. After I survived, I realized that I had to do something, and soon. I developed a “Body Peace Project” which was a very genuine effort to apologize to my body, to forgive myself, and to accept my current condition. I also began to be an advocate for others with disabilities and chronic illnesses, and that activist work was tremendously beneficial for my own mental health.”
This is my first video :) There aren’t any captions on this but here a run down of what this is all about:
Resolutions for the new year:
- Self care as a large part of self preservation including: continuing to battle for my right to exams, doctors who are competent, specialists…. Not feeling guilty about taking care of myself… Remembering to honor my own body… Giving myself love like I would to anyone I care deeply about
- Being Honest. Honesty with myself and with others…only keeping those I can be fully honest about my body and my entire being with. Honesty as a way not to internalize isolation or damaging views on my own self worth as a person with chronic illness.
- Continuing on with my small business but also involving others in it for help and expansion.
- Community - surrounding myself with POC with disabilities/chronic illness, QPOC, general chronically ill community…on the internet and in person.
- Final point: Fuck the idea that if you are not ~independent~ you are unworthy as a person. Remember this and not forgetting that interdependence and community is beautiful. It is not damaging or makes you less worthy as an individual.
*Special thanks to Fabian Romero who inspired this with their awesome resolutions video posted recently
My 2013 New Year’s Resolution Revolution!
More: water, fruits & vegs, art, SEX, writing & reading, self-care, dates w/hubby, LIPSTICK, and movement (walking, wheeling, weights, stretching)
Less (or fewer): foods that make me sick, pills (more natural treatments), sleeping in & late nights, spending $$, sugar, TV, computer, iPod
I will wear what is comfortable and makes me happy— not only what is flattering.
I will stand up for myself to doctor’s and ask for the accommodations I need!
I will remember that I am NOT a burden.
I will continue to train Cash Puppy as a service dog.
I will improve my time management skills.
Most of all, I will be EASIER on myself, and continue the progress I have made in accepting my body and loving my life.
Happy 2013, Lovelies!
[image: Chubby, angry-looking cat sitting in a wheelchair. Text reads: “Please sign the petition to have Ehlers-Danlos Syndrome recognized as a disabling condition by Social Security!! You’d be helping many people who are suffering, and who are often unable to purchase private insurance because of ‘pre-existing condition’ exclusions. http://tinyurl.com/byacwo3 Also, you’d be making this cat happy, because she really loves ‘her’ wheelchair. And, trust me. You don’t want to see her unhappy.”]
Please feel free to grab and re-post this image anywhere — I am hoping that if we can get enough people on Flickr/FB/Twitter/LJ/DW/G+ to share the petition link, we can reach our goal of 25,000 signatures by January 2, when the petition expires.
Thanks SO much for your support! Ehlers-Danlos Syndrome can have a devastating effect on your life and health. It can be, quite literally, crippling.
Some people with EDS need braces to hold their heads upright, because their neck can’t support the weight of their skull. Charlie is a Canadian man currently fighting medical bureaucracy trying to get appropriate treatment for his severe EDS.
And, yet, it’s nowhere to be found in any of the U.S. government/Social Security listings of diseases which can be considered as a disability (based on degree of impairment.) Yes, it’s a rare disease — but not as rare as many of the ones on Social Security’s listings of disabling conditions.
Many patients with EDS been told by doctors that they’d vaguely heard of EDS in medical school, but had never seen a patient with it. In part, that’s because it’s uncommon — but other people go undiagnosed for years because doctors miss the signs that could have gotten them appropriate treatment and saved their mobility.
Please sign and signal-boost, if you would be willing.
Currently, it’s not being hosted by an original domain. I wanted to wait until the website was completely mapped out before buying domains. Regardless, it is up and running! I posted a story that was emailed tonight.
You can find the website here. The forum “Pink Girls” is currently underwork and will be posted sometime this week! I’m so happy to have a space to connect with fellow women with physical disabilities, chronic illnesses, etc.
Once again, if you have a story that you want to share please email me at:
I also am looking for continual writers, too! If you would be interested in posting weekly or monthly stories, please include that in your email. If so: please send a photo, include your name, a mini-bio, and explain your physical disability or (and) illness. You’ll then be featured under “Our Writers”. Please note: I understand how some women with physical disabilities are wary with sharing photos, so excluding a photo is completely understandable! It is up to you!
I also want to clarify that this will always remain the advice blog. I am the advice columnist of this blog and strive to answer all messages as fast as possible! You can always come here to ask questions and seek advice. Within a small amount of time (hopefully), this will have its own domain as well.
So, please check out our first story! Leave a comment, some feedback, etc. and remember to submit your own stories, too!
Relevant to the discussion of fat-shaming doctors, this is a list of doctors worldwide who cater to fat-bodied individuals. Many of the doctors on this list offer things such as larger blood pressure cuffs, bigger hospital gowns, and don’t blame every medical problem a patient comes in with on their weight.
It’s not by any means a full list, nor does it cover every area, so if you have a fat-friendly doctor who’s not on the list, get in contact with the site to get them added!
This is an excellent resources so I thought it would be of help to those who face stigma from their current medical professionals :)
I have been thinking about how to write this piece for many days now. It is just such a difficult subject to think about, to talk about to write about. Its almost as if just by typing out the letters S-U-I-C-I-D-E, I will make it happen for myself or for someone else. Its like a conversation ‘killer’, its so serious we can’t even joke about it. We can’t consider why it might be an understandable decision for some people who are forced to live lives where they don’t feel that they have any options open to them. It’s personally hard for me to write about because it is very personal to me. I seriously tried to kill myself as a teenager. My cousin hung himself on new years day this year. In the last 10 months or so the idea of suicide has been heavy on my mind. I feel it’s important to write about it to talk about it, I’m sure it’s a personal issue for so many people, yet it is something we all struggle to talk about. It’s a part of life that would be easier to not think about. I am filled with the guilt that I did not help my cousin; that I did not have the chance to talk to him about it, to help him find the courage to talk about it. I know logically that it is not my fault but those feelings are still there: I want to rewind the clock. Maybe the hardest thing to face about his death is that I can relate to that desire to end it all so much. It’s so close to my heart. I so often cannot stand this illness, the way it has stolen so much of my life from me, the person I use to be the things I used to do. The statistics say that 1 in 10 suicides are related to chronic illnesses so I’m certainly not alone in this struggle.
I think of being diagnosed with a chronic illness as being given two illnesses: there are two weights to carry, they are tied permanently or semi permanently onto your body and you can’t shake them. One of the packs is the disease: it’s living with the every day experience of disease, the unpredictability of it, the lack of a cure, the lack of control over your own body, the change in your life, living a smaller life, living with constant pain. This first heavy pack sucks, it’s heavy and constant and drains hope, and takes so much strength to keep going through, but the second pack is almost worse: it’s the weight of having to live with other people’s perceptions about your illness, it’s having to live with prejudice, misunderstanding, the isolation that comes with having a chronic illness especially having those illnesses that are so badly understood like, CFS, Fibromyalgia, Crohns disease, Lyme disease, Lupus, Hepatitis, Emotional health illnesses, Ménière’s disease…the list goes on… having to live with the limitations of medicine which is so often unable to relieve many of the symptoms. Also having to live with the dismissal of medics who often see people with these illnesses as time wasters or worse as hypochondriacs. Having to explain yourself to people constantly, sometimes having to deal with the abuse that you get, having to live with the stigma, people thinking your making a fuss about nothing, people feeling sorry for you, people treating you like you’re crazy or invisible. The second pack is a killer as if the first pack was not enough to kill you! The second pack is often the thing that threatens to push me off the edge. Considering how heavy and relentless the first pack is, the least people can do is make the second pack lighter, offer understanding, support, make the world more accessible, more comfortable for us, but my experience is that people just make it harder to live a chronic life, even good meaning people can cause me so much exhaustion or physical and emotional pain. There are those days, those moments where it overwhelms me. When I feel imprisoned, in this body and in this oppressive world and death seems like a way out. No one can assure me things will get easier, this illness is so unpredictable; no one can tell what the future holds for me. I can hope that people will change, that people will understand, that I can teach people and keep fighting for people to understand.
I’m conscious that I feel compelled to end this piece with something positive to those out there struggling to live. I want to say hang in there. I want to convince myself that I can keep going. I don’t know really. I don’t see the problem as people including myself not having enough strength. Living with chronic ill health forces you to be super strong, emotionally resilient, you have to fight for understanding, for medical attention, to get through each day. That is strength that cannot be measured. So it is not to those that are suicidal that I should feel compelled to speak, it’s to the people that treat us so badly. It’s to all the managers I have had that have worked me into the ground and discriminated against me because of my illness. It is to all those doctors that make people feel like liars, time wasters, hypochodriacs. It’s to all the able bodied and non-chronic people who ignore, dismiss, abuse, insult, and care less about people with chronic illness. Maybe we all have a responsibility to making sure our behaviours do not dismiss people, do not close down people’s options until death feels like the only way out.
Audrey Lorde’s powerful message that self-care is political warfare speaks so much to me right now. It is not just about chronic illness and disability, it is about all of those people in society that feel silenced. It is about all of those people in society that are systematically targeted by the oppressive and discriminatory politics of the powerful few. I don’t know what it is that keeps me alive, that keeps me going that keeps me fighting, but I like to think that it is because I do not want the powerful to win. I do not want to believe that my life is not valuable just because the world makes it seem that way. I want collective self-care, I want to keep caring for myself and for others because I want our survival to mean something, I want our lives to be lived and for that living to be witnessed. For the creativity, the laughter, the tears, pain, love and the beauty of our lives to be archived to be valued. I feel a little like I’m being all slushy and touchy feely I guess I am but I’m also militant about it, I will not go down easily.
1. Having an increase in your symptoms means you have done been doing TOO MUCH! and running on empty energy. Sometimes even though it feels like you have done nothing to trigger the crash but the truth is your body is trying to tell you to slow down.
2. Doing TOO MUCH is NOT your fault. Don’t beat yourself up or stress, spend more time being pleased with yourself for how well you are listening to your body now.
3. Meditate/rest ESPECIALLY when you DON’T want to.
- not wanting to meditate is probably a sign that your are running on empty energy or are disconnected from what your body needs - meditating can tell you more about your body than anything else - helps with halting that empty energy adrenal energy train.
4. Make FUN! Break the rules
- Stick to your schedule - Only break the rules to have FUN. not because you feel obliged to do something, not because you feel pressured.
5. RELAX your muscles as often as you can remember.
6. SLOW DOWN as often as you can remember.
7. REST! REST! REST!
- Low rest -
- sitting down
- watching tv/plays/cinema
- relaxed talking
- Medium rest -
- Listening - tv/radio/music/books
- Lying down
- Light sleep
- Watching relaxed content
- Deep -
- Deep sleep
- Eyes closed - lights off - non anxious thoughts
8. Remember to ask yourself the question ‘how can I do this activity with less energy?’ et sitting down, lying down, closing eyes
9. Eat GOOD food!
- Healthy nutritious and tasty - avoid being too full or too empty.
10. Keep tuned in
- DON’T push through, repress or ignore your body
11. Be gentle & kind to your body
- Long baths, treatments, oils, massage, nice bedding, cosy seats, good hugs.
Chronically Sexxxy is a blog that exists to help people with both visible and invisible illnesses navigate the complex world of sex, relationships, and body issues, and all that entails.
We are here to help, and if we can’t help then we can at least field your questions to a larger audience or point you in the right direction. There aren’t many resources out there about sex and relationships for those of us whose bodies work differently than the standard. We hope you will like and reblog this post and aid us in reaching a larger audience, and maybe together we can create a strong, information-centric community that truly gets to help people.
Thanks, and as always, we’re here to help!
THEN YOU SHOULD FOLLOW:
This blog is run by my fabulous friend and she could use all the support she could get, so follow and signal boost away! :D
I really enjoy the rare opportunity I get nowadays to dress up!
(especially when I actually get to wear heels)
It does wonders for my self image, ya know?