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

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When Life Doesn’t Go As Planned

You know the phrase “If you want to make God laugh, tell Him your plans“? I’m a firm believer in this many times when I’m in and out of doctor’s offices. As I’m leaving one specialist, I suddenly find myself in another ward or on the phone to schedule an appointment with a completely new specialist to diagnose new symptoms from side effects of medications or new complications of my disease.

When I started having issues neurologically a few years ago, my care team seemed to multiply by the hour.

Something doesn’t add up” one doctor would say. “But I can’t figure out what it is. Let’s send you to a _______-ist so they can figure out what this new manifestation is.” Suddenly, one doctor turned into an Endocrinologist, a Urologist, a Neurologist, Allergist and an ENT.

Not only does this cost me a lot of unnecessary stress and patience, but suddenly I find myself dishing out more cash that I don’t have. I get it – autoimmune disease is complicated. And usually, when you have one Autoimmune Disease, there are likely to be complications with more than one system in the body. When does it end?

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It takes time to diagnose all of this, and when I say time, I don’t mean overnight. When I was dealing with a rare form of migraines, it took months before one of my symptoms was even taken seriously. “It’s just a side effect of your meds,” they’d say, when I knew that wasn’t the case.

Here comes an important lesson on advocacy:

Speak up for yourself when you know something in your body has changed and be heard.

If you’re not being heard, do not be afraid to seek a second opinion – or a third opinion – in order to start seeing some positive results.

I spent more time in my Neurologist’s office this year than I’ve ever spent before and soon, it began to affect my Crohn’s to the point where I was unable to work. The stress in my body would not calm down no matter the amount of steroids, IVs or infusions. It seemed that when one symptom would calm down, that would reflect an increase of another symptom in a completely different organ! I was losing hope, money and ultimately, my job.

Finally, last spring I found out the rare form of migraines I suffer from and we began treating it. I’m at a point now where they are somewhat controlled, but they come in clusters & the symptoms are reaching a peak again. The symptoms are scary enough to deal with on their own. Add Crohn’s to the mix and I’ve got myself a brewing volcano ready to blow at any time.. and it did.

The last year or so, I’ve been dealing with partial obstructions way more than ever before.

At times, I’d be able to stay home and try to deal with them on my own, but over the last 2 years, that hasn’t been the case. I had obstructions around Christmas and again in spring. It changed my “plans” up dramatically, especially considering I was to train for my first sprint triathlon coming up in summer! Like is always does, life’s plans changed and soon I found myself running out of medical leave and quickly. Between all of my specialists, it was like managing 2 very full-time jobs and I just couldn’t keep up any longer.

With around 10 care team members, I spent more time trying to manage which doctor I had to see when and schedule the rest of my life and work around all of these new tests I was having. Waiting and worsening. Waiting for authorizations through insurance.. while filling out checks and mailing bills in. That’s what my life had become. In and out of flares, as well as emergency rooms – my life was going from unbalanced to unmanageable.

Life ultimately threw a wrench in my plans when I recently found myself unemployed. I’m looking for new health insurance and trying to find ways to make up for lost time in work, as well as trying to secure my plans for the future. I’ve not spent my days looking forward toward the future, as I believe that as one door closes, another one opens. I am trying to deal with these setbacks in the only way I know how to with any illness – perseverance for answers, teaming up with my doctors and listening and complying with my treatment plans.

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It’s been a very rough 6 months, but if any of my 13 years living with Crohn’s Disease have taught me anything, it’s certainly “expected the unexpected.” “Hope” is the only free prescription and I’ll be filling it quite frequently in my days to come.

Relationships & IBD

Friends have come, friends have gone – this is a hard one for me to talk about. Sometimes I feel like I don’t have support & resources in others besides the people I’m close to that I travel with for advocacy projects. Family attempts to understand in their own way and then you’ve always got people/family/friends who believe that ignorance is bliss. And I’ll be honest…it hurts. But I know that those people cope differently than I do, and if they were in my shoes, their journey would be way different – because everyone’s is!

The thing about living with any type of serious illness, especially one that can frequently cause unpleasant hospital visits, is always feeling like I’m the inferior, needy one in a relationship. In the past, I’ve always feared that someone won’t want to tolerate it – my sickness and all the complications that come with it.

I mean, does the average person know that living with IBD can mean monthly visits to a GI, collecting your own stool sample at home?

Or really, do they actually WANT to know about the bowel and bathroom symptoms we deal with and how often they occur?! I’m preaching to myself about stigma right now because it seems that often, I’m a hypocrite. I’ve always dated people who know I live with IBD because I’m afraid of judgment and lack of understanding and because when I did date others, I had some bad experiences.

Many years ago, after some injustices and trauma, I decided that dating just wasn’t for me. I isolate myself and for a very good reason. Not necessarily to keep people out, but more to protect myself. There came a point in my life after graduating college and not knowing where my life would take me, and after two very failed relationships when I decided what I really needed…was to work on loving myself. It was a hard pill to swallow, especially because I had been literally swallowing so many pills for so many different diagnoses. I intentionally cut people out and cut ties with people who I knew would only make my fragile mental and physical state worse. And honestly? It was the best thing I have ever done for myself.

For the last 5 years, I have expressed more love for the person who really deserves it – me.

This may sound selfish and I admit it is. It took me nearly 30 years to learn how to actually care for myself, especially with the additional tasks of dealing with disease and caring for others for a living. I have served people in their darkest of times, their lowest of lows and I have found peace in seeing how my service has positively affected them.

My prince charming may not be wearing a crown, he may not even be wearing fancy clothes. He may even find himself in similar circumstances rebuilding his life like I am mine. There will always be some people who don’t want to deal with something that they know can/will throw a wrench in their plans. That’s their issue. I may have had bad experiences with people running who were terrified because of how sick I have been in the past. But I have hopes that if God wants me to find another piece of myself in someone else, he will let me – whether I am sick or celebrating remission. And I hope to celebrate other’s health milestones with them too.

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Visit the full article here: Relationships w/IBD

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Love & Chronic Illness

Living with a chronic illness is hard. I realize what an understatement that must seem, but many people will never come to that realization. The reality of living with chronic illness sometimes seems like you’re the main character in a science fiction fantasy novel, with one premise; you’re the cursed character.

I’ve intentionally put off relationships because I know that the maturity level in some of the people I’ve dated would never be able to put up with the level of responsibility they would face in taking on aspects of being the significant other to a partner living with illness. You see, many people, single, dating, married or separated, don’t know what the true meaning of “significant” when we refer to relationships. Many people don’t understand what it truly means to have a “better half” to help you balance things when things are at the absolute worst when it comes to health.

Before falling in love with someone your “recipe for love” requires two ingredients – you NEED to love yourself first & you NEED to be committed to your health, your self-care, and your safety. Don’t ever think self-care is selfish; when it comes to relationships, commitment means knowing what you want. If you feel incomplete, your partner will read into that.

In order to find yourself, find something in your day that you commit to doing for yourself that makes you happy. Take a walk to the mailbox, extend your walk by half a block every night & get fresh air. Being cooped in in a house resting while sick, or exhausted from work – you need to completely disconnect from your “regular” life and toss it all aside. Learn to paint, draw or find an artsy outlet that lets you put your mind on hold and your spirit to work. Challenge yourself. If you can, go for a boat ride and remind yourself of the beautiful creatures all around us. Sit back in a lawn chair at night and listen to the crickets chirp and meditate. Once or twice a day, do something by yourself, for yourself, no matter how small, as a reminder of how far you’ve come.

It takes a very special person to accept the things patients may be surrounded by at times. I’m not saying every significant other should be extremely accepting of the fact that if you have complications of a chronic illness and you find yourself in the hospital often, that it will be easy 100% of the time. But it definitely hurts when they aren’t.

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Caregivers who witness things that their loved one goes through (especially that you may not remember maybe due to sedation, PTSD, etc.), are affected just as much on a very different level. This can change them and we need to acknowledge that. It can be terrifying and it can be a reminder just how close to death a loved one can come, but it can also prove how strong your partner is. Whether you’ve lived your whole life with IBD or you are newly diagnosed, illness has the potential to change the course of relationships. A strong partner, no matter what the circumstances, makes for a strong relationship.

I get it – it’s very hard to love yourself when you don’t recognize yourself in the mirror.

Something I find useful is putting 2-3 quotes of finding acceptance throughout my house. I have one in my mirror about progress and how to move forward. I have one near every mirror to remind myself that who I am on the outside, does not necessarily define who I am on the inside. And not until then, do I begin (again) to realize my self-worth, my self-love and what I need to do moving forward to provide myself self-care. Falling in love with yourself and becoming a fighter doesn’t come overnight and it may not come in your first few years dealing with the worst of your symptoms. Rome wasn’t built in a day & acceptance certainly doesn’t come overnight when dealing with a serious illness. Remember that for every crack you endure, it makes you that much stronger.

Diamonds are made by pressure – never forget that. You are a diamond.

Once you’ve fallen in love with who YOU are, you can then begin to search for someone who will be by your side; not in front of you, nor behind you – but someone who will stand with you in the pouring rain, sit with you in the hospital at 3am or stand next to you on your wedding day and take that vow of “in sickness and in health” very literally. I am a big believer that the support you truly want to surround yourself with, will always stay by your side in an uphill fight, not in front of you to protect you, or behind you to catch you when you fall – beside you. Fighting with you, facing problems head-on with you.

But first you must love yourself. Then, and only then, can you begin to let someone else in to experience the type of love you’ve always wanted? So before you sign up for that online dating website, ask yourself “How much do I love myself?” first.

Read the full blog here: https://crohnsdisease.com/living/love-chronic-illness/

When Your Friends Are Living Life.. Without You

I see it every year, more pictures of friends expanding their families, getting engaged, traveling the world with groups of friends. And I get sad. It’s an initial wave of sadness that hits me, because selfishly, I know that those things are not in the works for me right now.. and it hurts to think that they may never happen.

Some of these envious feelings happen even with friends who have IBD, like me!

How do they manage their illness, illness with a spouse, illness with a spouse and children, illness, a spouse, children, friends & a full-time job. While sick. And I’m barely treading water. I’m single, I live in a run down apartment with rescues and have a hospital bag packed during most months of the year.

Feelings begin to override your brain in the location that tells you not to be jealous or angry or elicit any sort of reaction other than happiness for someone else. Your brain only lets you see the things illness has taken from you and leaves you wondering if you’ll ever have that.. if you’ll ever deserve to be that happy.

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But the thing that hurts the most about when your friends start making plans is when they stop including you in them. They have no concept of what “I’m sorry, I can’t make it tonight, I’m going to have to cancel” really means. For the most part, many friends who don’t understand never tried to and have gotten angry when I’ve had to cancel last minute. I guess because of the things I was unable to do, that meant someone else felt they had the power to decide what I could do from now on in part of that relationship. And now, those relationships are non-existent.

If I ever want to feel bad about myself, I just log on to social media around the holidays and see how full of life my friend’s lives are.

It’s human nature to feel embarrassed or a little shameful when life has kicked some extra life lessons your way and you’re quite a few steps behind the people you surround yourself with.

If I see a ring, I’m reminded how long it’s been since I’ve had a serious relationship and start to overthink everything about why I haven’t – intentionally or not. If I see pictures of a wedding, I wonder why I didn’t make the cut to be involved in some way, shape or form. If I see a baby, I wonder if someone will ever love me enough and have that opportunity to bring a child into this world. Will I be healthy enough for more than one person? When I see a new home or car, I’m reminded that my financial means constrict every part of my decision-making in life, because my income goes towards medical bills, prescriptions, and procedures. When I see new adventures, traveling the world, being free.. I feel tied down.

The thing is, I know I shouldn’t feel this way, but when you’ve had so many things taken from you, it’s inevitable to have a selfish moment and think “will that ever be me?

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Read my FULL story here: When Your Friends Are Living Life.. Without You