To the stranger who told me I’m not disabled

Most of the time, when people ask for help, they really need it.

Friends at the 2015 Sacramento Arthritis Foundation Walk to Cure Arthritis
Friends at the 2015 Sacramento Arthritis Foundation Walk to Cure Arthritis. Left to right: Cyd, Mel, Charis, Denice, Lori

And many of us are scared to ask because we’re afraid we’ll be attacked for it. A good friend recently put a crowdfunding page together in an effort to help me resist homelessness and survive the winter while I seek Social Security Disability Insurance (SSDI). Today, another friend shared the YouCaring link (edit 2/10/16: link no longer live) on her facebook page in support of me.

What happened next shocked me. Someone commented on my friend’s post about the youcaring campaign to help me. And it wasn’t supportive. It was along the lines of, “When I am hurting I still get up and go to work. Your friend should find a job, she can work.” I engaged in conversation with this person over several hours and took screenshots of the whole interaction, knowing the person might later delete her comments (which she did). My effort was to see her side of the story – and in the end it came out that she had lost a child years ago and she was projecting her grief onto me in the form of hatred and judgment.  It was very sad, and all I could do was continue repeating myself that I would be happy to talk with her in person so she could learn more about ankylosing spondylitis.

Those of us struggling to live with our chronic diagnoses are so often put into positions where we are challenged for our disabilities and forced to prove how sick we are. How degrading.

We, who take the brave step of asking for help, sometimes drown in fear of people whose erred assumptions and judgments of us keeps us silenced. And I am shocked that things, like this prolonged interaction, happen so often to people who will not stay and talk about it at such length like I did, who will simply slide back into the shadows because it’s too painful to stay and stand up to a bully.

We don’t [always] look sick, but we shouldn’t have to in order to seek help, and we shouldn’t have to assume the role of mediator when we are attacked by people who don’t know us but who believe with their whole heart that their perspective should be our reality.

During the 2014 Loco 200 Relay, a bucket list item that nearly killed me
During the 2014 Loco 200 Relay, a bucket list item that nearly killed me

Most of us still struggle to get by, to work, and we work hard to keep our diseases invisible because we fear these interactions with people who are ignorant to what we deal with day by day. We struggle to work full-time when we really should be on disability, and our fear of being stigmatized, isolated, and shunned keeps us working our butts off and then collapsing at home, eating microwave meals or to-go dinners that definitely do nothing to help our physical health, and always thinking, “Maybe tomorrow I’ll have the mental and physical ability to take the trash out.” We lose friendships because all we have the energy for is work so that we maintain a roof over our heads. This isn’t life. We have been taught to suck it up because that’s easier than dealing with the shame and embarrassment of asking for help and being “called out” by people who know nothing of our internal struggle and nothing of what our home lives and our mental lives look like or do to us. We are told off by people – they are good people, too – for our laziness, and told we need to “just work like everyone else.”

Work kills us. Do you think that if we could work and still maintain function in the rest of our lives that we would be asking for help? How selfish of you to think we are lazy.

We, whose bodies never rest even when we’re sleeping, are too lazy to just deal with the inflammation in our joints that wracks our bodies with spasms late at night when even the trees are dreaming. We are too lazy to ignore the last five nights of insomnia that we lived with because we fought the temptation to go to the emergency room because there, too, we are judged and shamed for being “drug seekers.” We are too lazy to get off the phone call with our insurance company that we’ve been on hold with for 5 hours, too lazy to quit going to the doctor and just take care of ourselves for crying out loud, too lazy to just put the cane down and walk like a normal person, too lazy to ignore the physical pain and the mental distress (that’s all in our heads, anyway, right?) and get on with our lives, too lazy to just be like everyone else.  That’s right, lazy.

It is difficult to be a face of compassion on the receiving end of judgment by a person who is not demonstrating compassion. Someone who doesn’t know us and who may not have any idea what it is like to fight every day to get out of bed, to wash the dishes, to dream of cooking, to push a broom across the floor, wash our clothes, shop for groceries, much less consider wearing our bodies out more by attempting to work on top of it all. Oh, and don’t forget there’s a social life to try to figure out in there somewhere.

I know what it is like to be healthy and work full time and try to balance all the other responsibilities of adult life. It is downright exhausting. I know because I used to do it; I used to be healthy after all. But now I’m sick, through no fault of my own, and I can compare the feeling of being sick and trying to keep up to being healthy and being able to keep up with energy left over. If you’re tired on a Friday afternoon from working a full week you know what tired is for one day. If you live with a chronic disease and work, every day feels like Friday after a long week. Or worse.

So, before you question those who ask for help, especially if your perspective is that all bodies and minds are as capable as yours, consider that we might just be telling the truth and perhaps you could add some capability to your repertoire and try listening. Really listening. Really. Listen. It might be the first time someone who truly needs help has built up enough nerve to ask, shaking in her sick body.

Remember, we mostly want the same things in life. Health, happiness, a reason to live. We are more alike than we are different. Getting to that point takes a different recipe of ability and access and resource for everyone. Help us live beside you as equals by listening to our stories and understanding that in order to have a meaningful existence we may actually need help to get there. Help from those who have something they don’t need and can share. Help us not be bullied when our timid voices cry for help.

Love always wins
Love always wins

If we could all share our stories more openly without fear of judgment, ridicule, and hatred, more people would be more compassionate and more open to the vulnerable.

One who demonstrates hatred against me demonstrates hatred against all those who struggle invisibly, and I will speak for them to my last breath.

Advertisements

20 thoughts on “To the stranger who told me I’m not disabled”

  1. dear charis,

    I’m glad you have engaged the person who ignorantly shamed and hurt you. I very often retreat and suffer in silence and it’s killing me! There are so many great comments here, like Ashley trying to explain the “hand-out” dilemma and Kim sharing her painful but oh-so-true story. And Bob talking about the shame and loss that we all feel at not being able to work.

    I have RA. I too have gotten zero compassion from my family. They just don’t get it! I too applied for SSI (and was denied). They were upset that I was using a walker that had not been prescribed by a doctor! (= you are a big faker trying to get sympathy) when that was the only way I could get around! I haven’t worked in a long time and I feel like I am slipping away.

    Thanks for being courageous. You are beautiful.

    Like

  2. Thank you! Thank you! I have AS & Lupus reading your stories are as if you have ease drop in on my sad life. I have no one to hear me or care that I have an “illness” anymore. You see I lost my family after I was diagnosed. I had been married for 25 years with 3 children. My husband decided he “didn’t sign up to be a caregiver”. So he asked me to leave. When I refused he became psychologically,emotionally and financially abusive. He gave me the silent treatment and closed my bank accounts. When I did leave he alienated my children against me and tried to get my own mother to even say I was crazy. You see he didn’t believe I was sick… He said I was faking my illness. He filed divorce papers and custody papers stating that my illness was fake. He even had me arrested and order of protection against me for my children and him. Even though I was receiving SSDI the judge decided that “everyone can work” his attorney keep saying I was “unemployed” even though my doctors said I was unable to work.

    My children are 20,22 & 9 my husband has brainwashed them into believing I’m faking being in pain. They’ve seen him leave me at the hospital and not come back. My older daughter told me to burn in Hell. Ive nursed my husband thru 3 back surgery, 5 cases of shingles 2 cases of chicken pox and did end of life care for his mother. Never did I ever believe he would leave me.

    Like

  3. I applaud you for handling this gracefully. This person is in a lot of pain, too. Apparently she is so blindsided, by grief, that it’s turned into anger and bitterness.
    I lost my 3 yr old grandson on Sept. 8, 2013, who I had raised since birth, to a horrible, freak, tragic accident. I can’t begin to tell you what it was like hovering over his tiny body, trying to breathe life back into him. I grieve everyday. It never stops. However, I’ve learned to place my grief, in the hands of God and not be angry, or take it out on others.
    Believe me, it wasn’t easy raising a child, at my age, 56, with numerous disabilities. It was definitely a “Labor of Love.” But honestly this beautiful child is what kept me pushing the limits to keep on. To keep walking. I remember times, when I literally pulled myself across the floor, on my stomach, with my arms. .I love and miss him, so much. But I refuse to feel anger and bitterness. His name is Journey and I know he would never want his Maw Maw, to feel this way, or to be angry. I thank God, for every day I had with this beautiful, special, little guy. He was my “buddy”. I literally lived for him. I’m still trying to learn to live, without him.
    I prayed furiously for God to give me the strength, to take care of this beautiful child, who brought me so much joy. I pray everyday, for God to give me the strength to go on, without him. I’m only without him, in the physical sense, as I carry him with me always, in my heart, mind and soul.

    Charis, pray for her. She is not talking, or thinking with a healthy mind.
    I remember very well, when the Doctors disabled me. I didn’t ask for it. Actually I was quite shocked and thought they had got me confused, with another patient. I’m from Louisiana and in 1994, at the advice, of a well renowned Neurologist, from New Orleans, who did extensive testing knew something was seriously wrong, but couldn’t identify what it was? She offered me to go to any other Dr and be tested, but there was no more testing they could do, that she had not already done.
    She told me about this Doctor, in Los Angeles, that was a world renowned German Doctor. A pioneer in diagnostics. At that time, in 1994 he had already invented 3 different diagnostic test, in the US, that we didn’t have. His name is Dr. Nachman Brautbar. She advised me to see him, if any way possible. I didn’t have any benefits at this time. I had no clue how I was going to do this. A wonderful Attorney offered to pay for me to see this Dr as well as fly me to Los Angeles. I had to pay him back, of course. But it was a Godsend. It cost $7000.00, for me to go to Los Angeles and see this Dr. It was well worth it. He [Dr.] was telling my symptoms, before I could tell him. And he was right on.
    A month after I returned home I received his extensive report. The first page said 100% class A disabled. I didn’t understand what that meant, at the time. I called his office and talked to a nurse. She explained it to me. I just knew they had me confused with someone else. His diagnosis was Autoimmune disease, of the Connective tissues. The Doctor in turn called me and explained this to me.
    What? Me disabled. No way. I was in my mid 30’s and at the top of my game. I was working, in a position most work a lifetime to get into. I was running a company. The “Boss”. Who wants to give up that?? I continued to work. I kept getting sicker and sicker. I’m 5’7″ and my weight dropped to 103 lbs. My solution. Keep working and work more. I became a workaholic. Working from 60-85 hours a week. I had so much pride and just couldn’t accept even the thought, of being disabled.
    I then found a local Dr., who was brilliant. I gave her all my medical test and reports, from the Dr. in Los Angeles, as I was really starting to suffer horrifically and knew I needed treatment, but had no clue, as to what type of treatment?
    Also I was raising 2 young children, at the time. Not working just wasn’t an option for me. I was so lucky, in the Dr., that I did find here. She listened! She immediately ran test, to try to pinpoint exactly what type of Autoimmune Disease I had? First she ran rest for Lyme’s disease. Negative. Next was HLA B27. BIngo! She ran it again and got another positive. I was diagnosed with Reiter’s Syndrome. Back then there really wasn’t much information, about Reiter’s. The Arthritis foundation had the only information available. And it was only a small paragraph.
    My continued efforts to work finally came to a halt, when I had to have IV Chemo, in 1995, to try to get it under control, as it was running rampant, in my body. Had to stop the Chemo, after 4 months, as my kidneys were going into cystitis. I didn’t even know my own self then. What was happening? This couldn’t be real. I had always been healthy, other than a battle, with Cancer, at 29 years old. I had major surgery for that and thank God they got it all. [I’m still Cancer free to this day].
    My biggest fear was for my children.
    So called Friends started to disappear, when I couldn’t do all the things they wanted me to do, with them. I had become photo sensitive and allergic, to sunlight. My own family, who are not very compassionate didn’t even check on me. I lived only 1 mile from them.
    I was literally battling this alone. my husband worked out of state and rarely came home. I found out he had a whole other life, in the state he was working in. Complete with an apartment, with a mistress and child born, from their affair. The frustration turned into depression. I was called a “lazy, drug addict, by my own family. I wouldn’t even take narcotics then, for the pain, even though the Dr. offered them to me.
    I finally realized, that I had to file for disability, if I was going to make it, as I had put my husband, out of “My” home.
    I’ve always been a strong, courageous person, but I can tell you I felt fear. Fear for the future. Fear of the unknown. Fear of how was I going to support myself, much less my children? It took me 6 years to get my disability. For those 6 years I worked several part time cash paying jobs. Anything to bring in a little money, to pay my house note and take care of my children.
    As you probably know HLA B27 is hereditary. I had no clue which side of the family this came from? I have to admit there were times when I thought, not wished, but thought that if only one of my family members, or friends had this perhaps they could understand. That’s all I wanted. Understanding. I’m not a self pity person.
    Sadly, about 8 yrs ago my older brother started having serious problems, with his hands. I knew immediately. We were not very close. I told him to get tested. He called me a week later and told me he was positive. It’s sad, that he had to be struck with this to understand. After all he was one who had commented to others [and that hurt so bad], that I was just a lazy drug addict. [ I had never taken drugs in my life] Now my niece, his daughter is also positive, only 29 yrs old, suffering and in treatment. This has brought us closer, finally. But I find it sad, that it took this for him and the rest, of my family to finally have some understanding.
    It’s hard for others to understand about things they know nothing about. It’s called ignorance.
    Since then I’ve battled Reiter’s {RA}, Lupus, Fibromyalgia, DDD, DJD, 12 Disc Herniations, [Can’t have back and neck surgery, due to other medical conditions] AS, 2 right knee surgeries, 2 left leg surgeries. Both of my knees need replacing.
    As if that wasn’t enough I’ve now been blindsided, with MS. I never expected the MS. Earlier this year I became unable to walk unassisted . On March 2 this year I drove myself to the ER, at 2am slumped over the steering wheel. I had been having symptoms, painful ones, for over a week, that I had never had before. After test were ran the Chief of Staff, of the hospital came in. He explained to me, that I was in Acute stage of RRMS. That my Neurological system was trying to shut down. Told me to see a Neurologist within 2 days.
    I have an awesome Neurologist, who specializes in MS. I’m now taking IV Infusions, of Tysabri
    @28 days. I’m now able to walk unassisted.
    In April I had been ordered, into a wheelchair 24/7, by my Pain specialist, as I was having bad falls, due to my balance, from the MS. I told him, that was not going to happen. I have a powerchair, that the Dr.s ordered in 2006. I’ve only been in it, to ride my grandsons around. These IV Infusions are my only hope. That and the grace of God. I am in the highest risk category, for getting the Brain infection, PML, from the infusions, but I will take my chances, given the other. I’ve noticed these infusions are also helping the inflammation, from the RA.
    Sorry this is so long.
    I’ve read your blog. It’s awesome. Keep on being strong. I’ve learned our struggles makes us stronger. I’ve made it through things I didn’t think possible, or should I say the Dr.s said wasn’t possible?
    I truly feel sorry, for this person, who made such comments to you, on your blog. I hope they find a way to cope in a healthy way, with their loss. I can’t imagine carrying around so much bitterness, but I know she is hurting, too, but in a different way. The old saying “misery accompanies misery” is so true.
    I’m praying for you. That you get your SSI. Keep the Grace you have, for it’s a wonderful gift.
    Sending prayers, for comfort and strength. Big [[Hugs]]
    Cherryl

    Liked by 1 person

  4. It’s so easy for people to judge us when they cannot live inside our bodies as we do. I am so glad that you have such amazing people in your life who truly care about you.
    Your compassion and love towards others is very inspiring.

    Like

  5. I think maybe you maxxed a download limit, I can’t view any of the pictures of the convo, but no matter, I really identified with this post, and appreciated your insight and comments on the situation. Thanks for being brave and posting about it all.

    Liked by 1 person

  6. I am always so disgusted by people who think its just a matter of working harder. But the rare few who offers true understanding and compassion.and those makethe ignorant ones disappear from my mind.

    Liked by 1 person

  7. Charis, it’s very distressing to read that you were treated this way. Autoimmune illnesses are notorious in that most do not exhibit outward manifestations, as you know, but the patient is often very sick, in a great deal of pain, or a combination of the two. I would not have responded to that vile person since it’s my belief that the person who wrote those despicable comments seems to be insensitive to your pain. His/her pain must be overwhelming, and subconsciously s/he wants everyone else to be as miserable as s/he apparently is. Please don’t dwell on it.

    I encourage you to seek SSDI benefits, but it is not an easy or a quick solution. It took me more than two years, and unfortunately, that is the norm. I don’t know when you applied, but it is a long, terribly frustrating process. Eventually you will need to hire a lawyer, but don’t despair. Social Security sets the rate; in my case (the early aughts), the legal fee was set at $4,000. The fee is automatically deducted from your initial settlement check, before the monthly payments start. More unfortunately, there is no shortcut, and expect that your case will take about two years. The only applicants who receive expedited case reviews are either blind or are 100 percent bedridden. At least that’s what a case worker told me at the time.

    You have probably assembled all the relevant medical records., but I hope you kept copies because chances are high SS will lose all or part of them, and you will have to resubmit the “lost” documents. After a lengthy case review, SS will reject your application. It is at that point that you will need an attorney to represent you. That lawyer does not get paid if you do not get approved, so don’t worry about his or her fee.

    Next comes the hearing where you will have to present your case to an administrative law judge,. You have a big hill to climb because SS will try to deny your claim because of your AGE. The younger the applicant, the more resistant SS is to approving their claim because benefits will be paid out over a long time period. Someone has probably told these things, but I reiterate them for anyone who reads this comment and is considering filing for benefits.

    I would like to discuss your situation privately. Please email me at your convenience.

    Liked by 1 person

  8. I am appalled but not surprised at the response of that angry person. I know you will receive many similar responses. It was extremely upsetting to read that response because I am a sick body as well. For your own sake, ignore these responses. In most cases, you won’t convince them. You have to be there, as we are. I too have been judged and suffered guilt for 19 years, gave up a nursing career, retrained in another much less physical field that I was still incapable of due to invisible pain. I’m at retirement age now so don’t have to explain as much, why I’m not working.
    I miss working, I have for a long time. I would give anything to trade just enough pain to be able to work. And I know for certain that you would too. When you can’t work, you loose your identity, and social connections and feel like a nobody.
    So, Charis, unfortunately , there are many of us that believe and support you. You won’t have the strength to convince the others. Let your true friends do that for you and use your strength to get through your battle, day by day, sometimes hour by hour. By the way, disability pensions are seldom enough to live on.

    Like

  9. I’m appalled by that woman. I am inspired by you. I am too a sufferer of an invisible illness. (AS). Lucky you, or maybe not, you got to expierence a healthy body. I was diagnosed at 10 years old. I do not know a healthy normal…I only know this tortured “new” normal. I’ve never really worked, in the conventional sense…though I’ve off and on created businesses of my own and am raising 3 children. However in regards to this woman with whom you engaged in this difficult conversation… I can empathize or see the validity in people having this “anti-handout” mentality, perhaps stemming from a political ideology. But the only way we could ever successfully create a civil society that was free from government “handouts”….is if the people believing in that approach were overwhelming charitable. If the people who advocate for those types of socioeconomical principles…they MUST lead by example and show compassion to their fellow man. If only to provide a basis for their viewpoints. You did a beautiful job of showing her what we all should show everyone, everyday. I appreciate your efforts…not just in bringing awareness to our disease, but also to bring awareness to how human being should blindly treat one another. Thank you.

    Like

  10. Just wow. Your compassion for others is staggering. I’ve always thought that I had a lot of compassion, but I have a mere drop. Thank goodness this isn’t a competition, huh? I have a dear friend who is filled with anger & sometimes it hurts me when she talks about her gun & her attitude of “better them than me”. And other times I understand that she has her own pain. I have the emotional, mental, & physical pain to deal with, so who am I to judge her? Often, I’ve felt a bit superior when we talk because I’m preaching love & peace. And yet we are as close as sisters.

    I had an interesting time the last 2 weeks or so, with my narcotic pain meds having been decreased drastically due to an intolerance to one of them. The pain specialist told me I had to wait for my appt to get something different. At first I was in awful pain & as the days went by, it got worse & worse. And suddenly, one day, it stopped. Just like that! I was able to do things I hadn’t been able to do for 5 years. It was amazing & wonderful! Turns out this is one of the things that happens when one is on these medications for too long without a break; one’s body no longer produces the endorphins to naturally help you deal with pain. Same as when one takes too many antibiotics & one’s immune system starts to dysfunction. At this time, I’ve been put back on the high dosages of that medication & I’m trying to decide if I want to hop back on that merry-go-round again. Perhaps, I will use them as needed & not take them all day every day like in the past.

    Thank you for being such a kind, compassionate lover of people & having this blog so that I can learn from you. Some older people think that they’ve had so many experiences & learned so much in their lives that they don’t think that there is anything that younger folks can teach them. Apparently I am a wise woman, because I know just how much I don’t know & I am eager to learn from anyone who has the knowledge.

    Like

    1. Linea,

      Thank you so much for your kind and caring words. I think I will never get used to those who challenge my reality, which I think is actually a good thing as long as I keep doing everything I can to respond knowing that they are challenging me out of their own ignorance and fear. We all have stories, we just want people to listen, and I try to remember that we all cry out differently for those who might listen.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s