Becoming Visible: My Life with ‘Invisible Illness’

I am a face of “Invisible Illness”. I want to show you what one symptom of living with an “invisible” me is like, in hopes others struggling with illness, disease & the purgatory of Undiagnosis know “I see you” to give others insight what my invisible illness looks like. So let me take off my mask..

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I live with multiple Autoimmune diseases; often referred to “Invisible Illnesses” because these diseases cannot be seen to the naked eye. Because of this, many who are diagnosed with Autoimmune diseases, like Crohn’s Disease or ulcerative colitis, are not taken seriously because physically looking at me, you cannot see the physical toll the internal destruction and irreversible damage.
My invisible illness means taking upwards of 20 pills a day. Some of these medications include daily or daily injections, monthly infusions, etc. Some are so harmful, they016aa680ca304250b0560f8f52076eb0ac84a29bef must be identified as “black box” medications. This means death is a possibility and has been reported as the cause of death in some patients. I don’t say this to scare anyone, but medications for chronic illness can be huge decisions that can greatly impact your quality of life, not to mention your finances, social life, holiday celebrations & major milestones in your family’s life. it doesn’t show the anxiety of knowing some weeks I’ve had to make the choice of being able to afford groceries or medications. It doesn’t show the hundreds of denials from insurance companies, stacks of appeals my doctors and I have fought endlessly for & the major disappointment of never getting the medications I need in order to be able to save an organ. It doesn’t show you the thousands of prescriptions I’ve taken since age 15. It doesn’t show the guilt of failing multiple medications & never knowing when a drug that will work for you shows up. It doesn’t show the guilt, missing out on amazing opportunities & chances to achieve my goals. 

My invisible illness is located in nearly every organ: skin, small bowel, large & small intestine, rectum, esophagus, sympathetic nervous system, musculoskeletal system, deteriorating bones due to long-term steroid use & joints that begin to fuse together. You cannot see the obstructions in my intestine, the ulcers in my esophagus, the number of times I’ve thrown up, nor time spent on the bathroom floor writhing in pain. You can’t see the amounts of blood in my stool that makes me so anemic I’ve required blood transfusion. What others can’t see is an infection in my intestinal tract, the long-term side effects of small doses of chemotherapy injected weekly and monthly infusions. Invisible illness is blood clots, respiratory infections, sepsis, pancreatitis, exploratory surgeries, fusing of bones, inflammation of eyes, ulcers in the nose and mouth, insomnia, osteoporosis. it causes cancers, changes in weight, my skin, my hair & my self-esteem. It doesn’t show tubes, PICC lines, NG tubes or preps for surgery. It doesn’t show anxiety, withdrawal from friends or the lasting effects of PTSD many patients experience after traumatic & near-death experiences.

It doesn’t show the self-esteem Iose every time I look in the mirror and don’t recognize the reflection, wondering where the “old me” went and what, if anything, I can do to get her back. There are times my illness becomes visible. My eyes sink in, I’m visibly tired, swimsuvery pale. Sometimes I’m thin, making it more apparent. Rude, uninvited comments like “you look much healthier than before”, only to be left thinking “was I that fat before??”

20140213-191351.jpgIt doesn’t show the friendships I’ve lost because I’ve had to back out of plans, fun events and celebrations. It doesn’t show how hard it is to maintain a relationship with someone; the fatigue, the guilt of not feeling well enough to care for myself and the guilt knowing they may have to care for me,. Caregiver/Family tip: They may not always know what to say or how to offer help, but even offering to come over, sit with they & just stay awhile speaks volumes. A little help gives a lot of hope. Pain is incredibly lonely.5047f22d-b48b-41e5-863d-3b404bb8b64e

Despite my invisible illness, I’ve mustered strength to run a couple 1/2 marathons, educate myself & become an advocate for others. This past year, I was asked to be an Ambassador for an organization I have such great respect for. For nearly 4 years, I have been using the Charity Miles app, which donates to the Crohn’s & Colitis Foundation of America. It’s extremely rewarding to be well enough to train for endurance events, especially while training and fundraising for Team Challenge events.

Recently, I needed emergency care for my arthritis, so at 2am, I called the on-call Emergency Rheumatologist. I explained my situation and was brushed off and told to “just get through tonight”. I hung up the phone and sobbed. I felt completely invisible.you see, invisible illness isn’t just just brushed under the rug by common folk, it’s also invisible to some of our specialists – who challenge us & presume our pain “cannot be that bad”. You may be able to see my glassy, inflamed eyes with bags underneath them, but no one knows the struggle my insides are putting me through. Your own doctors & nurses do n’t understand the excruciating pain of what it means to be a patient living with autoimmune disease, trapped inside a body in which your cells attack your entire body. the cells meant to protect you communicate with one another fight each other instead. if we can’t get providers to understand the seriousness of our pain, who will?

01e658b86c12aad902753f3b75349acfe021bf17b9I struggle mentally, like many other autoimmune patients, with putting any biologic into my body. I’m weak, foggy & often sore and sick the next day. ask yourself: How would you
plan my week around which day I would inject? Would you do Fridays so you could rest/recuperate over the weekend?  would you inject Mondays so that by the time the weekend came you would be able to enjoy it?.. As someone living with an illness that seems obvious only to start to cycle over right away on Monday? Quite a perspective, isn’t it?

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What it shows is my strength, despite the odds I’ve dealt with, the redirection I’ve taken in stride & the pride I feel overcoming each flare I experience. Illness changes you. When we explain to others what it’s like to live with invisible illness we often say that our insides don’t match our outsides. We share our stories in hopes that our future will include more support & give others courage to tell someone “I’m struggling too “. Sometimes we just need people to simply be there, not analyzing our every move, not picking us apart because they don’t perceive our illness to be the level of “disability” which people won’t mock us for parking in the handicap zone, for using “the perks” of Disability Services on campuses, missing work to “sleep all day” or “catch up on talk shows”. We need you just to be here. Just be with us, even in silence, to just feel.. Visible.

XOXO,
jojo

14 Years Later – A Family Room Perspective

Full disclosure: Out of all the blogs I’ve written, I’m particularly proud of this one. I really hope you take the time to read the whole thing (the whole article can be found here & also again at the bottom of this page). I poured my heart and soul into this particular piece, as sitting in this room brought back flooding memories into my heart and mind. Our family spent a lot of time on this floor, sometimes particularly in this room. I hope this resonates with patients that have gone through similar serious situations and also with the family members who might have had to say goodbye to a family member at one point not knowing what the outcome would be.
Today I celebrate 14 years living with this diagnosis; a day that would alter the course of my entire life, unknowingly. There was so much we didn’t know that day – the bad & the very good.

To read the full article, click here

This room is full of emotions. This is the room that 14 years ago, my parents would be pulled from and told that I have sepsis, pancreatitis, and needed surgery for ruptured cysts from endometriosis, and also later told that this might be a goodbye.

Goodbye.

It’s a strange notion, knowing you survived death.

I “celebrate” my diagnosis day on July 13, 3 days after a milestone birthday. Just a young girl navigating the world when suddenly shocked by Crohn’s Disease.

I was so fragile, my body being kept alive by TPN (Total Parenteral Nutrition). There was a picc line placed in my left arm & through that line, nutrition was given to me through feedings to my heart.

Today is the first time I walked back into the family room. It was eerily quiet enough to hear a pin drop, but my thoughts were louder than my head could contain. What did these 14 years contain that this room could barely hold?

Full blog here: 14 Years Later: A Family Room Perspective

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To read the rest of this blog (I highly encourage it!), please click:

Shout Out to the Caregivers

Shout out to the caregivers.

The ones who take off from work to be with us during long and sometimes tough procedures.
The ones who would drop anything to take you to where you need to be.
The ones who hold you when you cry and make you feel safe when you are most vulnerable.
The ones who would do anything to switch spots with you in a heartbeat and want to take the pain from you.

Shout out for staying in my hospital room on a cot, watching me sleep while you get none.
To the ones who attend every single appointment with you, taking the time out of their jam-packed day to listen to our options and how to move forward.
To the ones who ever give up on us, when we want to give up on ourselves.
To the ones who kiss us in our hospital beds and sometimes, even crawl into bed with us.
To the ones who drop everything to come and make sure that you are situated properly.
To the ones who don’t know what they can do and fear is plastered across their face.
To the ones who lose just as much as us when we are hospitalized, require surgery and have a much longer road ahead of us.
To the ones who never let us say “I quit”.

See the rest of the post by clicking below.

 

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See original content at:  Inflammatory Bowel Disease . Net

Being the Sick Friend

The unspoken label no one wants, but is referred to anyway.. the “sick” friend. Not everyone has one, but in a world full of amazing scientific research, as well as the best diagnostics that we’ve ever had….. there is likely more than one in a group of friends.

I’m not talking about the friend that has migraines once in a while that seem to go away with Excedrin. I’m talking about the friend that misses parties, weddings, or their own graduations because they are too sick to leave their house, their hospital bed, and their safe space.

I’m that friend

As much as I hate saying it out loud, much less typing it, I’m that friend. I’m that friend that has to send text messages that start with an apology and usually end in an “I promise we’ll catch up soon.” I’m the friend that makes promises that I can’t keep. I’m the friend that’s easy to drop, gets left out of group text messages, and soon, doesn’t get invited to nuptials that as kids, was the only thing best friends dreamed about.

I’m the friend whose illness is inconvenient, but not just to me. It’s inconvenient for someone trying to plan dinners. It’s inconvenient when you think I’m not the life of the party because I can’t make a drunken toast at a bachelorette party because my meds interact. (I’m still me).

I’m the friend whose hospitalizations, procedures, and doctor appointmentsyou get sick of hearing about. Sure, you were very supportive when I found out I was sick, but where did you go after?

I guess I was a friend when it was convenient.
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to read the rest, read the original content here: Being the Sick Friend

The Guilt of Failing Meds

Let’s talk about an uncomfortable topic today: when medications fail you.. rather when YOU failed medications.

There is much guilt, anger, and denial that is not talked about enough, and I hope that through this piece, we can come together and speak about what isn’t spoken about enough: failure. When we were growing up, we were taught that from all mistakes, come lessons. We learn, we gain wisdom, and we grow. But what about when the failures aren’t our fault?

Let’s talk about failing a medication that was supposed to be “one of the greatest medications to treat “disease A” and you immediately fail it. What then? There is a sense of hopelessness that rushes over you of guilt that maybe you are that patient. The patient who doesn’t respond to any meds. “What did I do? Am I at fault? Could I or should I have done something that could have prevented this?”

You are not your prescription failures

(You’re simply a unicorn that is hard to treat because your genes are simply magic).

I’m going to be very transparent in this article. I’m TERRIFIED I will fail this next biologic. There is a certain guilt that resembles shame when you fail a very expensive medication. You are forced to put all your eggs in one basket. It’s not talked about enough.

After you fail all oral medications available to you & realize that the remainder of your life you’re expected to take these drugs to have ANY quality of life & to control active disease. There’s a certain emptiness. And a LOT of guilt.

Fear of failing

There is so much energy (doctors appts, procedures, weekly labs) that go unseen, but the most invisible is FEAR. fear of failing. Time after time. GUILT. That you spend so much money per year trialing new drugs to improve quality of life. No room for error for many of us.

After SO many failed attempts, I don’t blame patients for feeling self-shame, because I’ve been there. I’m there now. I cry when I think of finding out I had RA after becoming allergic to Humira – a blessing in disguise. I cry when I think about the number of attempts we gave Humira.

 

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Photo by Pixabay on Pexels.com

Read the rest in the original article here:https://inflammatoryboweldisease.net/living/guilt-failing-meds/