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

What Types of Doctors Should I See with IBD?

For many of us living with IBD, it seems like our care team is bigger than our immediate families. But there are very important reasons to have these specialists on our teams. Do you know which doctors you should have on your team and why? Below we give a few examples of why it’s important and how they can each individually help us as patients to live a successful and proactive life as a patient.

Ophthalmologist

There are many complications that may arise in patients with IBD. One obvious symptom of something going wrong with inflammation in our bodies is when our eyes look irritated, red and glossy. It can be an obvious sign of inflammation for those that look for it. But did you know that there are some eye manifestations that could cause permanent damage if a professional does not catch it in time? When your regular eye doctor examines you and finds out you have an immune-mediated disease, he/she will likely recommend a good Ophthalmologist that can help oversee your case. In certain cases, like Uveitis or Scleritis, it’s important to see your specialist as soon as possible to prevent further damage, like vision loss or impairment.

Urologist

Often times, a Urologist may come into the picture when we have trouble emptying our bladders or when certain circumstances pop up, like fistulas. Because of the complexity of these manifestations, a Urologist may order certain types of therapies to help with the course of your disease. Many women experience muscle weakness and may require pelvic floor therapy. Therapies for IBD, especially in women, have come a very long way since even 15-20 years ago. A Urologist may help you strengthen certain muscles that have atrophied or have been affected by surgeries or by the complex nature of the course that is IBD. Again, IBD is different in many patients and you may never need to see a Urologist.

Endocrinologist

There are many times patients with IBD find themselves at an Endocrinologist. Because of the side effects prednisone has, GI’s may be quick to send a patient who is in remission but still experiences fatigue and unusual symptoms. A quick check of the thyroid provides each doctor a baseline on how you may be reacting to certain medications and also helps rule out any additional medication anomalies dealing with the Endocrine system, in addition to thyroid issues.

High risk OBGYN

This is important especially for patients who want to start a family, in addition to female patients who are affected by IBD in their reproductive parts, like Crohn’s Disease of the Vulva. Seeing someone who knows what they are looking at is extremely important. Ask your GI if they can give you a referral to someone who can help manage your case.

Rheumatologist

Often times, in immune-mediated diseases, it can be hard to find the core reason why things occur. Is it another underlining condition we aren’t treating? Is it a side effect of the meds we’re currently on that are starting to cause issues? Has your joint pain worsened in ways that affect your mobility and quality of life? Many times, we are referred to Rheumatology to rule other immune-mediated diseases out – like Lupus, Rheumatoid Arthritis and many other diseases that can contribute confusing symptoms on top of an already painful disease. These specialists help diagnose and treat joint pain and other issues related to the bones, muscles and joints.

Therapist

It’s important to see a medical professional about the stresses that IBD brings on. It’s ALWAYS okay to seek help, especially proactively. As IBD patients, we deal with numerous issues and each IBD is different. The stress that can be brought on of physical symptoms like fistulas and abscesses can be extremely isolating. Talking this through with a seasoned professional who deals with situations like this every day can be very therapeutic. It’s just as important to be proactive with your mental health just as much as your physical health.

Colorectal Surgeon and Gastroenterologist Care Team

Probably the most important on this list would be your GI team. It’s important and crucial for your overall well-being to be in constant, effective communication with your GI care team, letting them know what’s going on with your help and to help manage gut disorders, inflammation, and infections that may affect your GI tract.

There may be more or less than these specialists on your care team. How have other specialists helped you manage your team? Who on your care team has been crucial helping you to fight inflammation, stay in remission or stay out of the hospital?

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See the original article here: What Doctors Should I See?

some days are better than others

there’s been some silence over the last few weeks on my part. it’s not that i dont have anything particularly special to say.. the truth is, it’s hard to post something positive when it’s not truly how im feeling and it’s not the state i’ve been living in.

i dont want to broadcast only and bring others down, when all small victories should be celebrated. but that’s just not the case and lately it’s very hard to be transparent. i desperately try to balance out my posts to encourage and help others, but sometimes i need to back away and just decompress, because going quiet is the only way i know how to cope. i know that’s not the greatest way to handle things, but we’re working on getting me more stable in that way.

a few weeks ago, after my endoscopy, when i had my esophagus stretched in quite a few places to help me swallow. it helped for about 2-3 days, but again i started having awful choking and vomiting episodes. when i would try to eat solid food, i would chew, chew, chew and still choke. and when things would go down, they would come up about an hour later – liquids included.

so i had a follow up with my GI team and they said that in my biopsies, things looked okay but my muscles were having a very hard time doing their job from my esophagus to my stomach, thus the nausea and vomiting. what i wasn’t expecting to hear was that i would be spending more months with my picc line in than we had originally planned. and now, i am on a strict blended and juiced diet until my tract sees massive improvements.

here is where my guilt steps in.. another summer spent not eating food. sticking to the same frozen foods, blended and or steamed and drinking all of my calories in order to try to get my muscles functioning enough to eat more of a solid food diet vs. soft mechanical or pureed diet.

immediately, you think of all the things you can’t do, right? mainly because of my central line. ive recently fought many infections, one in my face. because im constantly massively dehydrated, im still on 3-4 IV infusions per week because my body just cant keep up with fluid intake. with and increase in temperature here in WI lately, and more combos of antibiotics, i can’t go out in the sun for lengths of time. i dehydrate so much quicker in this weather and im truly exhausted but 12pm. i sleep from 12-15 hours a night right now because my body is so exhausted. this is quite the opposite of my norm of 3-4 hours of sleep a night.

because of my picc line, i cant get it wet, which is no easy task. by the time im ready for a shower, im exhausted and spent most of my time sitting in the shower on a chair. picc lines also mean no pool and lake time. im desperately wishing my current therapies will get me back on track in order to have my line gone by mid july to celebrate my birthday, but that doesn’t seem to be the case. for the time being, ill continue therapies via IV for the next 2 months and see where things have improved with my esophagus & gut.

right now, im traveling to the hospital for treatments and various appointments 3-5x a week. the weeks ive been there 5 days.. they get long. im thankful that i have support that sends notes of support. i have been blessed the past year, as i approach my next birthday i really have faith things will be better than they’ve ever been.

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Importance of Maintenance Therapy for Mental Health in IBD

I try to be as transparent as I can when I do find myself actively blogging, but there will always be things that I choose not to share, for many reasons. I’m working on this, while at the same time maintaining my privacy.

Without help from friends and professional counseling and therapists, I would not be where I am today. Please do not be afraid to ask for help… before you really need it.

Part of my advocacy work is dedicating time to making our patient needs better known by our care providers that we need more of an action plan when it comes to mental health. It will NEVER be easy for any patient to walk away with a diagnosis that changes your life immensely and say “alright, well now I can move on with my life.” It’s just not reality and, many times, social media(s) are not our reality either. As a public health advocate, I choose carefully what I put on my feeds, to be as sincere and honest as possible. Within the last year, I’ve struggled. A lot. And that is OKAY. I’m receiving help, I’m on my way back to “normalcy,” and re-acceptance of what makes me who I am.

“Don’t take this all on by yourself”

Let something be said for all people here, ill or not: it’s more “normal” to see a therapist than it is not to and that is nothing to feel shameful about. In fact, there are many dedicated therapists that devote their practice to people living with acute and chronic illness. Illness never comes without hardship and having help to process a lot of the obstacles we face helps many in the long run. It should never just be you and your illness. It should always involve you, your care team, and your illness. Don’t take this all on by yourself. Ask your GI or GI Nurse how you can better manage your stress and anxiety through the help of a therapist. You would be surprised at how many benefits you’ll find (and how this affects your relationships as well!).

Bottom Line

Bottom Line: Everyone living with a chronic illness should have the option of being offered someone to talk to about their mental health. This is crucial for their physical health and overall well-being. If your doctor has not talked to you about your mental health and you think it’s a good idea to be proactive, rather than ask for help in crisis (which is important too!), ask and express your concern that you think it would be a good idea to talk to a therapist. You should never feel ashamed for wanting to walk through your problems in order to have a better quality of life.

Find this article at:  https://inflammatoryboweldisease.net/living/therapy/

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Dear Newly Diagnosed Self..

Dear 16 year old me,

In 3 days you will be diagnosed with something that will change your world, little girl. You’re going to mature much faster than you expected. Life wanted more out of you at a younger age & this will change you.

I know you just got out of a lengthy, scary, life-threatening ICU stay. I know you had to say goodbye far too early in life to loved ones who won’t ever feel the same about the things that went unsaid during and after that hospital stay.

You’ll need surgeries to improve your quality of life. The recovery may be a bit sensitive in nature and reading how those procedures are done is mortifying. You’ll quickly learn next to nothing is embarrassing to talk about with professionals.

You will lose friends.

You’ll realize you only needed those friends up until a certain point in your life and other new friends will step into your life when you find that you need it most. Don’t be afraid to open up to these friends. They accept you for who you are and they can relate to you on a whole different level because of the types of illness they have.

You’ll find people who love you and some will mistreat you. You will find “love for now” and realize quickly the most important person who loves you.. is you. When things get rough, try to let people in. (You’ll never want visitors at the hospital. This is something you don’t grow out of. And it’s OK to set those boundaries).

When you find love and lose it, you’ll realize you’re so much more and that being sick isn’t WHO you are, but a big part of your life. If someone is willing to walk away during the toughest of times, they don’t deserve your love during your best times. You’ll be stuck in this moment for quite some time, left feeling worthless, broken and unlovable. Don’t. You are worth so much more than you realize. You are more than blood counts and in-patient stays and endless infections. You are worth more than the needles that will be injected into your skin, the MRI machines that make noises louder than you’ve ever heard and definitely worth more than that co-pay that breaks your bank. You’re worth more than $0 in your bank account.

You will feel guilt when you’re unable to do something, but keep speaking up. There will be opportunities that come out of this situation that will make this disease so much easier to live with.

You will feel guilt that’s indescribable when you fail a medication that costs more than a house. Know that every person living with IBD is different and no two stories are the same. Still, hold out hope that one of these medications will place you in Remission. Don’t lose hope.

You’ll lose what you thought may be your career, and turn your life around to find what you wanted all your life is in front of you. Seize the moments you are given opportunities, no matter how conflicted you may feel about sharing parts of your story and yourself. You will learn that giving of yourself is a full-time job and the others are just hours in the day. You’ll dedicate your real career being your most raw, authentic self and you will help people in ways you never thought you could.

Find resources…

Find resources and use them to the best of your ability. You’ll realize quickly when you’re first diagnosed, there is next to nothing to read about your diagnosis. You will be a part of the patient community that will help change this and help eradicate the stigma of talking about bowel disease.

You’ll run your first half-marathon 6 weeks after you have surgery. it won’t be your last, but your journey to do a triathlon will be hindered by many things. Scary things.

You will be challenged with new, scary and serious diagnoses, but it is nothing you will not be able to handle. You will go through more than 15 GI’s before you find 1 very good egg who will be in your corner when things don’t go as planned. You care team will be big, but your hopes in finding Remission are much bigger.

Don’t give up.

Things DO get better. You will love and lose. You will face challenges you don’t deserve. You will fail many medications and spend a lot of your time in waiting rooms. But your voice will be heard. You will be an intricate part of patient-centered care and give vital feedback to your care teams that they take seriously. You will be a part of the change in patient advocacy and realize your potential from a young age and will quickly realize that is something you will never want to give up.

Never settle.

Be persistent.

Love yourself.

Hold on to hope; the best is yet to come.

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