Tag Archive | Invisible Illness

Feeling Free to Say “I Am Less Than Able Today”

Image by Lori PortkaWhy do I still feel embarrassed to express to my “well-bodied” friends that I am less-than-able on many days? Partly, I struggle to find the right words; the delicate balance between clear explanation and what I fear may sound like whiney complaining.

And then there is the bigger problem: the fact that I look so well. Especially on the days that my friends do see me. Because it is the days that I feel well enough to wash my hair (perhaps!), put on some makeup, get out of my lounge clothes, smile, and be present, that I also am able to keep my plans with them. They’re not seeing me on the days when my arms feel like 20lb. weights, too heavy to lift and brush the bed-tangles out of my hair. Or when I am still wearing what I woke up in, which many times even means what I went to bed in, because I was too exhausted to do anything but take off my bra the night before!

And truth be told, the sound and timber and strength of my voice doesn’t often change that much when my physical body is feeling poorly. And for me, my larynx can be in spasm causing hoarseness when I do feel well. So since that’s such a poor barometer for “feeling well vs. feeling poorly,” why is it then that people seem to think that what they hear over the phone lines is some sort of truth serum?

How many of you have heard those dreaded words, “Oh, but, you sound so good today! I’m glad!”

Unfortunately, they are often spoken before I’ve even had a chance to say how I am truly doing. So, I hesitate. Because it gets tiring saying, “um, thanks. But, actually, I’m not doing so hot today.” And even with my most well-intentioned friends and loved ones, I sometimes hear skepticism creep into their response. Because it just doesn’t make sense: but they sound so good…?

I share this all because I think it is a helpful reminder for anyone: both those of us struggling with day-to-day- fluctuations in our physical (or mental) capabilities and for those who are friends to, family members of, or caregivers for (including professionals) those with these “Invisible Illnesses.”

A quick reminder: Invisible Illnesses encompass a wide range of conditions and diseases. Take the common condition of arthritis, even. Yes, a joint could be swollen or red, but many times it can ache with no outward physical manifestation. So now think of all the conditions that effect our “internal systems,” from brain chemistry, to GI disorders, blood, vein and heart conditions, nervous system pain and disruption, connective tissue deterioration… the list goes on and on. These are the “Invisible Illnesses” that hide behind an external mirage of wellness. Wouldn’t it be handy if when something was ailing or failing on the inside, a bright red “warning spot” would emerge on an external location?! I sure would find this handy! Not only for letting others visibly know something painful is going on, but also to help pin-point for both myself and my doctors, what system is causing the pain.

Since this warning system technology is yet to be invented, we have to trust what people say. To take them at their word. You don’t have to completely understand what someone is describing to give them love, support and empathy. And unconditional trust in their word.

Sometimes I worry (too much so) that the person I am sharing my ills of the day with will think I am only saying it to get out of seeing them. At least for me, this is never the case! In fact, I am one to mask my true feelings of pain and discomfort just to avoid hurting or disappointing another. I know I am not alone in this.

So what can we all do as a collective group who cares for one another, to combat this?

For the “well-bodied” loved one:

  1. Don’t Assume: Don’t assume just because we sound okay, or even because we look okay, that we feel okay. Don’t assume that because we were able to yesterday, we will be able to today. Or even, if we were able 15 minutes ago, that our bodies’ are still feeling as abled in This minute.
  2. Listen: Please ask us how we are really doing. And then give us the space to truthfully answer. Take our answers at face value; please don’t judge or question (or fill in the blank!).
  3. Don’t feel like you need to fix the situation. All we really need is acceptance and acknowledgement: “Wow that sounds hard/painful/frustrating. I am sorry you are feeling so lousy/cruddy/down today.”
  4. It’s okay to ask “Is there any way I can be of support to you/help you right now?” But also know that we may not have an answer for that. It’s not that we don’t want your help (and I always like hearing a sincere offer from a friend), it’s just that: 1. We may not truly know of any way that you can help right now and 2. Many times all we need is space and time to heal. Which leads me to…
  5. Give us space without expectations. We know (believe me!) how hard it is to accept that there is no clear pattern to our symptoms. We may feel better in 1 day, 3 days, maybe even 30 minutes and that can be frustrating. So we just ask for your patience as we navigate the unknown.
  6. Don’t stop asking. This is a big one! And I don’t mean “don’t stop asking how we are doing” (although that’s a good thing, too); I mean don’t stop asking us to do things. Because there still are many days when we are able. And spending time with you, helping you out and supporting you, still means a lot to us. This is what feeds our soul and keeps us striving to be and get well.

Now, onto the “Invisible Illness” group:

  1. It’s Okay. You’re okay. You are whole and complete exactly as you are. That was hard for me to write, because I am not just saying it to you, I am saying it to myself. “I am whole exactly as I am.” You/I/WE do not have to be anything other than what we are capable of being. We did not create these illnesses nor are we using them as a crutch to “get out of things.” They inhibit what we can do on a daily business, but they are not the all of us.
  2. We are not defined by our illness. Our friends like and love us for who we are: the pure essence of us, our true spirit. Not for our physical abilities or dis-abilities. And if that is how someone defines “compatibility” in a relationship, they are not the kind of supportive friend you need, or deserve.
  3. Speak your truth. Don’t sugar-coat the situation. You don’t need to go into great length or detail (unless you need/want to). Just be clear and concise. Remember we are speaking a language only other people with chronic illnesses can understand. A friend of mine with varying daily abilities can say just one word to me, or give me that look, and I get it. It’s not going to be that way with all of our friends and caregivers, so…
  4. Be patient. You may need to explain your daily needs and limitations over and over again. This can feel frustrating or maybe even like the other person is questioning your authenticity. In most cases, this isn’t true. Remember: it’s a foreign language, and people don’t learn to comprehend a foreign tongue overnight! Most times, our loved ones keep asking questions, only because they want to understand.
  5. If someone asks how they can help, and you can think of a way, ASK IT. Don’t be stoic. Don’t hope that they’ll just guess at what you need. (How could they?!). And don’t ever feel embarrassed. This last one happens to me. Because I start to think “But, I should be able to do this.” Trust that if someone offers to help, their offer is sincere and that if what you ask for is too much for them, they will let you know. Think how helpful it would be to have someone cook you a meal, or run an errand/do a household chore, or even help you to color your hair.
  6. Remember that friendship is based on unconditional love. Our friends and lovers chose us for the person we bring out in them, just as we love them for the person they bring out in ourselves. We are all here to be our best selves, but that does not mean trying to be something other than you are. Or can be, physically. There is more to you, there is more to me, than our physicality.

It is up to all of us to spread the word on Invisible Illnesses. To take the stigma and mis-understanding out of them. Because millions and millions of us walk around looking “just like everyone else,” while on the inside of bodies are crumbling.

The first step to undoing all the misconceptions around these illnesses, is to start with a deeper understanding of each other, on a one to one basis. Which includes a deeper understanding of our own needs and abilities, followed by acceptance of same. It’s time to embrace all that we do bring to the world rather than all that we do not!

Open Letter to “Normals:” Please Read

understanding quote

I came across this letter posted on another blog.  It was originally written to help understand what people with Fibromyalgia live with.  But it is pertinent to all the patients who are and family member of the chronically, “invisibly” ill. So I tweaked it a little. And would be forever grateful if you took a moment to read it (and share it)!

Open Letter To Normals,

These are the things that I would like you to understand about me before you judge me…

Please understand that being sick doesn’t mean I’m not still a human being.  I may have to spend most of my day flat on my back in bed or on the couch in jammies, and I might not seem like great company, but I’m still me stuck inside this body.  I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy.”

When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means…  I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever.  Please, don’t say, “Oh, you’re sounding better!”  I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome. Happy ≠Healthy.

The same goes for “looking good.”  If I have the energy to, I like to put on a little make-up and a favorite sweater, maybe even curl my hair.  But looking good does not always equate to feeling good.  That’s why they are called Invisible Illnesses.  Looks can be very deceiving!

It is okay to say, “You sound happy today.”  Or, “I know you may not feel well, but you sure look pretty today!”

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing those five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting,
“sitting up”,
“walking”,
“thinking”,
“being sociable”
and so on  …. it applies to everything.

That’s what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the bathroom.  Please don’t attack me when I’m ill by saying, But you did it before! There is no formula to follow with my disease.  If I have the energy on one day, I will seize the opportunity and engage in the next present activity.  Just as likely (or even more so), I will get up with the intention of following-through on a plan, only to discover I am utterly exhausted after just getting dressed and will have to lie down.

If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute. If this happens please don’t take it personally (I’m just as sad and upset about it as you!).  I still like to be asked, even if I have to bow out.  It’s hard to have a chronic illness and to be excluded from events because you don’t want to make me “feel bad.”

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse.  Chronic Illnesses like Fibromyalgia, Lupus, Arthritis, M.S., Polychondritis (me!) and Abdominal Conditions, may cause secondary depression (wouldn’t you get depressed if you were stuck in bed for years on end!?) but it is not caused by depression. Telling me that I need some fresh air and exercise is not helpful and truthfully, incorrect – if I could do it, I would. And please understand that if I say I have to sit down / lie down / take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something.

Chronic, Invisible Illnesses do not forgive.

Please recognize that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends or family members (or friends of friends, for that matter!)  make a suggest at one point or another. At first, I tried them all.  But then I realized I was using up so much energy trying a myriad of treatments and “cures” that I was making myself sicker, not better. If there was something that cured, or even helped, people with Fibro, CFS and all the other “invisible illnesses,” we’d know about it.  This is not a drug-company conspiracy. There is a worldwide network (both on and off the internet) between people with chronic, invisible illnesses, and whenever there is a new, valid treatment option available, we already know about it (mind you, they are far and few between).

We’ve had to find acceptance in the frustrating fact that medicine has not caught up with the growing cases of autoimmune illnesses. The best support you can give us is to accept this fact yourself.  To accept us as we are, not as you would want us to be.

If after reading this, you still want to suggest a cure, then do it, but preferably in writing.  Please don’t expect me to  rush out and try it. If I haven’t had it suggested before, I’ll take what you said and discuss it with my doctor. Please understand that getting better from an illness like this can be painstakingly slow. (pun intended!)

People with Autoimmune Illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out. Our bodies are literally attacking themselves and there is no pattern that doctors or patients follow.  Each of our cases is unique and varied.

Don’t misunderstand me, I depend on you – people who are not sick – for many things.  But most importantly, I need you to understand me.

Thank you for your compassion,

The Invisibly Ill

Struggling to define “My Purpose”

“It is for us to make the effort.

The result is always in God’s hands.”

{Mahatma Gandhi}

What is my purpose in life?  How am I making a meaningful impact on the world?  What role do I play in making society a better place?

These are just a few of the questions I’ve wrestled with since become so ill that I had to stop working almost 7 years ago.  Even just writing down that number takes my breath away! 7 years. Wow. What happened to “my life” I wonder?

My first job, at 13, was a summer assistant in a school-age child care program, and it was the beginning of what was to become my career.  I loved children.  I love children (I just can no longer work with them). I climbed the “child care ladder” quickly, my passion and enthusiasm for my career shining in my every action.  I was promoted from lead teacher to toddler coordinator to assistant director to director; all before the age of 30.  I was 27 years old and the Director of a large center (135 children, 35 staff) looking over the Charles River in Boston, MA and I thought I could see the map of my whole future in front of me.

Before the final edict to stop working full time was given, I was a Staff Training and Development Specialist for two centers.  I was in my element; the hospital I worked for had created this position just for me; there was nothing more satisfying.

And then the “march of the dreaded symptoms” began their invasive take-over of my body. Da. Dum. Dum. It began with the incessant fatigue, migraines, myalgias, infections, and arthralgias we’ve all come to “love and loathe.”  When the arthritis took hold of my knees, my rheumatologist gave the medical orders that I could no longer “bend, stoop, kneel, lift, crawl, …” What? What?! That was my whole job!  How was I supposed to train teachers?  From up on high?  I was a hands-on (or I should say, knees-on), example driven teacher.  But, I persevered. I thought, there must be some way to make this work. But, I was told, no.  Kindly, but, “no” just the same.

NOW WHAT?

I didn’t have much time to think on my dilemma, when I was hit with my colon perforation (rupture) and the subsequent 3 years in and out of hospitals, truly fighting just to survive.  I didn’t question my “purpose” during this time because I knew, instinctively, that it was to be a living example of hope.  I saw the difference my interactions and words could make.  I was so focused on making it through the next day (alive) that I wasn’t overly concerned about where my future would take me.

But, then, somewhere along the years, I lost this trust: this trust that whatever I was doing was what I was meant to be doing in that moment, in that day.

I started to question myself and my place in the world.  I felt like I was more of a drain on life than a source of life.  My disease required me, and still requires me, to feel dependent on a lot of people.  It’s hard to feel purposeful when you feel like you have no independence.

I started to create my art, which was personally fulfilling.  But, again I struggled with how this activity translated into being a contributing member of society. When I was working with young children, nurturing their development, supporting their individuality and providing support and resources to the caregivers in their lives, the answer was clear.  To me, there was no better way to be “of purpose” than to facilitate the healthy growth of our future; children.

But here I was, healthy enough to be “hospital free” but not healthy enough to manage gainful employment.  And I had somehow equated gainful employment with having a positive impact on the world, living a meaningful life.

And that’s where I was wrong.  Once I could separate myself from the “person I thought I was going to be” from “the person I am today,” I could see that my roles have changed, not my purpose.

I am still intrinsically motivated to make a difference in other people’s lives.  I’m just still in the process of defining what that means for me.  And, most likely, will re-define that meaning each day anew.  Just as my body is a constantly changing landscape of symptoms, strengths, and weaknesses, I, too, have to regularly evolve.

So, what does my purpose look like today?  What is my defining life philosophy?

  • I know that to make a difference with just one person is to make a difference with many:  for example, by sharing my experiences in this blog, I am exponentially reaching out to the world.  If I can impact just one person, with one word, I’ve made a difference for that day!  My friend, so neatly said to me the other day, “just imagine, someone in China reads your blog and shares something that impacted her at the dinner table.  A week later, her cousin shares with a friend, ‘I heard this really cool thing the other day at a family dinner.’ And then that person shares it with her mother, and on, and on.”  Each one of us “bloggers” is making that difference!
  •  Which leads me to… the best way to make a difference is to be “faceless.”  I don’t have to be front and center anymore, the lead director of a company.  I am perfectly comfortable being the “silent partner” whose thoughts and spirit of HOPE are passed on, with no mention of the source. We are all The Source!
  • My artistic creations aren’t frivolous.  Every piece I create, from a necklace to a painting, has a piece of my loving energy in it.  And if that creation resonates with someone else’s soul and they choose it to grace their necks or the walls of their home, then I am already passing on my energy.  I am bringing beauty into people’s lives.  What could be “un-purposeful” about that?!
  • I don’t have to define what my purpose is going to be on a given day.  I just have to be open to listening to the intuitive messenger already inside me.  My personal goal for a day may be to nurture myself so I can be there for someone else the next day.  Or it may be to pick up the phone when a friend in need calls or even to answer the “calling” to reach out to a unknown cashier that is need of some sort of personal recognition on that day.  Just listen… the answer is already inside your soul.

Today, my life is filled with PURPOSE.  It may be unconventional, but it’s no less meaningful.  No matter where you are on the scale of physical and mental capabilities today, you, too, serve a one-of-a-kind purpose to the world.  Your mere existence is a gift. Try not to lose sight of that!

Today, I just have to make the effort… the results are up to a power greater than me!