Invisible Illness

Been trying to get switched over to SubQ infusions with an Immunologist at Emory since another Hematologist has left where I live. My chest port has stopped flushing again also. I’ve been on antibiotics a lot recently & I’ve got an inflammatory infection in my pelvic region. Last time I wound up in the E.R. with similar symptoms they just treated it as a UTI & ruptured ovarian cyst. I now know it wasn’t that although I do have cysts. It’s just one thing after the next. Please lord grant me the strength to get through this, please? Amen #CommonVariableImmuneDeficiency #InvisibleIllness #RareDisease #ChronicIllness

CIRS has stolen the past few years from my life, subjecting me to more emotional and academic suffering than I could have ever imagined. Almost costing me my life, and requiring me to place my plans for college and my future on hold.

Despite all the medical procedures, appointments, suffering, supplements, and dietary changes, the most challenging aspect of being chronically ill at a young age, especially in college, has been the lack of support from my friends, peers, and the people around me.

Sitting alone day after day, wondering why most of my friends didn't text or check in. The friends from childhood and high school, who I didn't talk to as often, but had always promised to "have my back”; during tough times, were nowhere to be found.

Spending night after night alone and sick in bed, while my friends were out drinking almost 5 nights a week, “making college memories”; and not understanding why I was denied the good health that all other 20-year-olds around me got to enjoy, despite doing everything in my power to be healthy.

Seeing the photos of my friend group at games, parties, and dinners, I felt a surge of sadness. I was unable to attend any of those events or be in any of the pictures because I was so unwell. My empty space in the photos was an open wound; I’d often cry while scrolling through Instagram, feeling left out and forgotten, wondering when things would change, when I’d get better, and when I’d be strong enough to do all the things I so desperately wanted.

As my Illness progressed over the last two years, my friends disappeared.

My need for support increased, but the amount I received was subsequently decreased. Instead of offering to do things I could participate in, my friend group simply stopped including me in plans. Despite knowing I was too sick to participate anyway, the conscious choice to stop inviting me felt like the worst type of targeted abandonment, on top of everything else I believed I’d already lost.

As I slowly gained back my health and strength, it freed me to begin processing the way others had treated me the whole time I was unwell. When I was so sick and in so much pain, I couldn't use any mental energy. I was too consumed with "the physical", trying every second just to make it through the day.

At first, I questioned myself, wondering if I deserved the lack of support because I was so tied up in my own situation, that I wasn't able to be a “good friend”.

The lack of support continued… and as I finally began feeling healthy enough to participate in some things again I wanted nothing more than to make up for all the times I missed out, but still, my friends never invited me.

Despite going through so much and finally beginning to regain a sense of health and normalcy, I still felt as though I was in the same position as when I was at my lowest: sitting on the sidelines and watching everybody else live life.

I grappled with the same thoughts that I still struggle with to this day; If my friends truly cared about me, they would've reached out. If they truly missed me, they would've called. If they had felt like something was missing from the group because it wasn't there, they would've made an effort to include me. None of these were done. So where does that leave me?

I was left feeling hurt and shocked by a deeper absence of empathy than anticipated. I've read that one reason many people are grateful for their illness is that it's shown them who their true friends are. But what do you do when your illness proves you have almost no true friends?

This reality is something I'm attempting to reconcile with as I continue to move forward.

Until my illness struck, I was seemingly content with my friendships.

I hope I'm never so sick again that my friendships are never again tested that way, but I still don't know if I'll know whether future friendships are true or superficial. I'm still struggling to come to terms with the fact that this disease has cost me most of my friendships. I’m still struggling to overcome some of the hurtful comments said to me. I'm still struggling to accept that when I was deathly ill and close to losing my life, almost no one was there for me.

Through this, I've learned that people, especially at a young age, don't like or don't know how to talk about illness. Most seem to find these conversations uncomfortable, or scary, and it remains poorly misunderstood by the public. The lack of support I received has not just come from my friends but from doctors, the healthcare system, and universities.

I think it's hard for anyone to know how to respond in this situation, and I still try to believe that even though I've been let down, those people still care about me. I can honestly say that I wouldn’t have known how I would’ve responded had one of my friends been in my shoes.

This has allowed me to tap into my deep reserves of self-reliance and strength that I didn't even know I had.

Once I got over the shocking reality of my friend's inability to be there for me, I've mostly been able to make it through by relying on myself.

As much as it hurts at times (most times), it reminds me how much I’ve learned to love and respect myself.

Most importantly, it has taught me that speaking about tough topics like CIRS is incredibly difficult and can seem impossible. But what's the point of feeling like nobody understands you if you don't try to help people understand?

Of course, this comes with some moral "guidelines," yet I still believe that doing what you can to spread the word within your own comfort level is important. If you're reading this now, I know you understand, and I sincerely hope you find your strength to do the same.

#CIRS #MentalHealth #ChronicIllness #InvisibleIllness

I have been feeling really under appreciated at work lately but also on the defensive. Due to my lupus I have an arrangement with my boss that allows me telework after working outdoor events or if I’m having a flare. Well that’s been happening a lot lately but I try to go in the office at least once a week. Anyways to get to the point of my story, when I’m on the office I get comments like “Oh you’re here, I wasn’t sure you still worked here” or snidely “Where have you been?”. It’s so hard to not get snarky because when I’m not at work I’m either in bed or at a doctors appointment or in the hospital. That’s it! I have to use all my PTO for my illness. I don’t get to take a week off for a vacation nor could I afford one since being sick is so expensive in the U.S.

Has anyone else experienced similar social situations?

#ChronicFatigue #ChronicPain #Lupus #AutoimmuneDisease #Ableism #InvisibleIllness #InvisibleDisability #SayTheWord

Lately, I've been immersing myself in TikTok videos that focus on the concept of a "glow up" for women. It's prompted me to reflect on the multitude of beauty products I've felt compelled to purchase in order to attain the idealized version of myself that exists in my mind.

At first, I began compiling a list of these products, but then I paused. This pause represents progress for me because, in the past, I would have undoubtedly succumbed to my insecurities and purchased every single item.

My appearance has been a source of insecurity for me, especially considering that I was unwell for a period of three years and I'm still in the process of recovering. Consequently, I have scars and lesions that don't align with the societal standards of “beauty.”

I often find myself striving to meet the expectations of others, as well as my own, regarding my physical appearance.

However, I don't resemble the individuals I constantly encounter on social media. While I recognize that these influencers likely have imperfections too, I refuse to feel ashamed of my own scars and the decision not to conceal them.

Over the past three years, I've managed to shed a significant amount of weight. But in the past year, I’ve experienced a weight gain.

Assessing my progress becomes challenging when it feels like I'm regressing compared to the people around me. It often feels like taking a step backward rather than moving forward.

Despite these challenges, I am gradually gaining a better understanding of my physical needs and identity. Such self-discovery doesn't happen overnight, particularly for someone who has endured chronic illness.

Ultimately, the emotional aspect is what truly matters, and I'm grateful to acknowledge that I've made substantial progress in that regard.

The societal pressures and expectations imposed on women concerning their physical appearance, behavior, and identity can often create a sense of burden and constraint. It is unjust that society tends to prioritize a person's looks over their accomplishments and character.

I firmly believe that every individual possesses their own unique beauty that goes beyond physical appearance.

If you are currently facing challenges and still persevering, you are displaying a strength and resilience that is truly admirable.

I want to remind you that you are strong, resilient, and powerful, regardless of what society may suggest.

Your commitment to personal growth and development sets you apart, and I hold deep respect for your inner strength and beautiful spirit.

Keep moving forward, and know that you are valued and appreciated for the incredible person that you are.

#CIRS #MentalHealth #Feminism #Empowerment #mold #Selflove #ChronicIllness #InvisibleIllness #Anxiety

I want to express my admiration for you. If you are taking the time to read this, it shows that you are committed to your personal growth and well-being. Whether you are facing your traumas during challenging times or in the process of recovering from them, your determination is evident.

It's important to remember that your experiences do not define you. Instead, it's how you respond to and process the pain that can lead to a better life.

Regardless of the hardships you've faced or are currently facing, it's crucial to prioritize self-respect and self-love, even if it feels daunting at first. I understand that it's an ongoing struggle, but I sincerely hope that one day you will fully believe in your own worth.

It's essential to recognize that vulnerability is not a sign of weakness or fragility, even when it seems like everything is falling apart. If you find it hard to believe right now, that's okay. I understand that my words may seem like just another generic message of encouragement, but I assure you, they come from a place of genuine strength.

Your ability to overcome your weaknesses is a testament to your inner strength. Learning to love yourself comes after forgiving yourself for how you coped in survival mode. It's not a reflection of who you are as a person, but rather a testament to your resilience and your decision to prioritize self-care and peace.

Regardless of your current circumstances, your personal strength is remarkable and deserves recognition. You have survived, and that makes you a survivor. Embrace and celebrate the person you are now, as well as the person you are striving to become.

#CIRS #Grief #Trauma #MentalHealth #ADHD #InvisibleIllness #vulnerabilty #Selflove #aletterto #ChronicIllness

I was always a person with a specific idea of success.

I pushed myself in all my classes, in extracurriculars, and at home.

My belief system that I had built around me told me that if I wasn’t trying to be the best at everything, then I wasn’t trying at all.

I had such impossible expectations for how I looked on paper, that my physical health had begun to take a toll.

The year before I left for college was when everything began to unravel.

With a loss in the family, graduating high school, and the oncoming stress of college, I was no longer taking care of myself as my body started to become sick.

Arriving at college, my body became much sicker.

It was so easy to simply measure it up to anxiety, or the new harsh and competitive environment my body had been thrown into; as well as listening to the doctors who were telling me the same.

One month into school I got a sinus infection. Two weeks later I got covid, only to get covid again only 3 months later.

In between was a never ending spiral of doctors appointments, missed classes, days filled with misery, sleep, and doctors appointments.

Throughout this time I was also diagnosed with anxiety, depression, and ADHD.

My roommate and I were both suspicious of mold in the room.

After multiple tests came back positive for mold, we sent in a formal complaint with the school. 

Christmas break I hoped would be enough to recharge me and begin with a fresh determination. But as time passed, I only felt sicker.

The pain had worsened to the point I knew I would not survive another quarter.

I felt a part of myself die that day I decided not to return.

I felt that in a way I had failed.

Like I had failed college, my classes, but even more I felt i had failed myself. 

 In late January 2022 I spent the night in the ER after having covid for the second time and being debilitated constantly.

What happened that night was something I look back on as traumatic as they dismissed my symptoms as anxiety… and tried to move me into a mental facility.

I felt unheard, abandoned, and broken when they dismissed me without any answers.

After that I spent the rest of my time at home trying to recover both physically and mentally.

Being at home for this year was lonely and empty.

I’ve always loved school – I love the idea of going to class and learning new things and challenging myself.

I wanted to be at school with my friends, taking classes and making progress.

Instead I spent most of my time in bed.

I grew sicker and sicker, going to doctor after doctor.

I spent my year on the living room couch, unable to do simple things such as be outside, make my own meals, and operate how I once did. 

After 8 months of doctors appointments, we found answers last fall.

I was diagnosed with Chronic Inflammatory response syndrome. (CIRS) A biotoxin illness caused by environmental toxins, such as the mold that grew in my dorm room. I have spent the past 6 months detoxing, recovering, and trying to heal.

Things change when people find themselves immersed in the unstable world of chronic illness.

The quality of my life changed dramatically as I struggled this year. It opened my eyes to the boundless resources that lie hidden, deep inside each of us.

My idea of success was once something reflected on a piece of paper, but now I realize it is so much more.

I am stronger than I realized, more capable than I ever knew, more creatively resourceful than I ever imagined, become a more compassionate individual, and I have become more inspired to become a light for someone’s darkness. 

Beyond all that, I am also re-learning things I’ve learned in the past. I’m learning how to be a good friend, sister, and daughter.

I am learning I am the sum of my past but also my current actions and my goals for the future. Every stage in my life, every door that has opened or closed has taught me something that has made me the woman I am today, and whether you know what happened to me behind that door or not, it shaped my life forever. For as Kaci Diane one said;

“I love the person I’ve become, because I fought to become her.”

#CIRS #ChronicIllness #InvisibleIllness #mold #biotoxin #biotoxinillness

Those of us with invisible chronic illness...Anyone else feel more validated when you actually have a cold/flu? Symptoms are very apparent, measurable, and relatable with the rest of the healthy people. Fever, runny nose, sore throat, cough - like I don't feel like I have to make my case that I'm sick.

Is this a weird victory?
#InvisibleIllness #ChronicIllness

(This is a long post and I won't apologise for it)

This is not something that is talked about openly by many of us.

Well it might be mentioned in passing but then we drop the conversation as it makes us uncomfortable and can be misunderstood as whining/complaining.

It is something that needs to be talked about more often.

I'm talking about grief.

Not the kind you have from the loss of a loved one.

I'm talking the grief that comes from a chronic illness, injury or a disability.

This type of grief keeps coming back too. One week you will be ok and the next you try to do something that was easy and find you can't do it any longer. But you keep trying to do it because you knew that you could once so why not now? You get angry, annoyed at yourself cause now you need help or modifications.

Then you start bargaining with yourself. You tell yourself you will do it a different way or won't do it at all....but wind up doing it again anyway because it's hard to admit and let go of what you were once capable of. You push through the difficulties and suffer the consequences time and time again.

You recognise it. You know it's part of a process you've been through since the beginning of your illness or disability.....you know you have to go through it and you know it will dredge up all the inadequacies you thought you had dealt with previously. 10, 30, 100 times previously dealt with.

But you know you will go through it all over again.

It's not just the loss of the big things in your life that you grieve.

It's all the little day to day things that suck away at your self worth.

Not being able to stand to do the dishes anymore. Having to sit to shower. That making your bed means you need to lie down for a bit to recover from the effort.

Forgetting something in your car that means you have to walk out to get it but the pain it creates is through the roof and you wish you could just be normal again.

It's those little, every day things that get to you the most. Those things we all still try to do when we can and then try to smile our way through it even though we feel like we are dying inside.

We take pain relief to mask the pain as best we can just to get through certain tasks.

We downplay how bad we are feeling as we know it makes others uncomfortable. We know we can't change much of it either so we try our best to just carry on.

We carry a world of grief and loss on our shoulders and rarely do we share how much of an impact it has on us. It's mostly when we are at our worst we share what we are going through and even then we try to downplay it.

We smile and joke and keep on going as we know there are few alternatives and we know in order to survive we have to lie to ourselves and to those around us.

We learn to cope with things that would crush others if they had to live it for a day. We are forever grateful that others don't have to live it for even an hour as we know, we understand the burden all too well.

We see how others look at us. We feel the weight of judgement.

Many times it's the judgement of ourselves that is the hardest.

We mourn the loss of how life used to be for us. The loss of our work identity and the struggle to find importance in our existence. To help others understand that we are still important. That we still matter. We mourn the loss of our social lives. Our hobbies. Our love lives.

Those are the big losses. In some ways those are easy to cope with.

It's the loss of all the little things that can crop up daily that gets to us.

The floor being dirty and you don't have the energy or wherewithal to deal with it as you know the pain that comes with it.

The laundry pile that has just grown because you know folding it all will hurt like hell.

The little bits of rubbish that sit on your side table that you haven't gotten around to putting in the bin yet.

The layer of dust on your furniture that drives you insane but you know you cannot get it all done in one hit.

There's one thousand other little examples that others just take for granted, that we feel guilt over. Shame that we can't maintain the same standards we once could.

We spend time wrestling with ourselves and then we finally begin to forgive ourselves and accept the new normal we find ourselves in.

Then the damned process begins all over again the next time we struggle to do something that was once easier to do.

We go through all the stages of processing that grief once again.

Sometimes it's easier and others it's not.

To be constantly reminded of who we once were and what we could once do feels like a slap each and every time.

But we deal with it.

We deal with it because there is no other alternative.

Life keeps on going no matter how much we wish it would give us time to adjust.

We grieve. We also laugh a lot. We keep pushing through these difficulties in the hopes that it will get easier (it usually doesn't). We live our lives with deep compassion and empathy for others as we dislike seeing them suffer. We live with a deeper understanding of what makes us human. We have learnt how to express ourselves differently and to find meaning in our lives in different ways. We communicate differently too. We have had to learn how to have deeper connections to those we love that isn't just based on our work life. We see the world differently.

Some days are just a battle to exist within ourselves. Some days are better than others.

You never can tell by looking at someone what they might be experiencing.

We grieve our many losses yet we try to smile through them all as the alternative, and their consequences, are just too much to contemplate.

#ChronicPain #ChronicIllness #Disability #MentalHealth #InvisibleIllness