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

Why 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!

May I Decide For You?

Why do we profess to know what’s best for others? Especially loved ones? Is it because we think we know them intimately more than they even know themselves? This is something that often happens with those battling chronic illness and daily limitations.

Our loved ones, out of fear of pushing us too far (IE: making us “sicker”), make decisions based on our well-being without ever consulting us. Many times, these decisions are made behind closed minds, during the pre-conversation/contemplation phase and we never even know different possibilities existed. And because they are never presented to us, we are never given the opportunity to make our own choices (and, yes, even mistakes).

The decision has already been made for us, under the guise of “loving-kindness.” I know that I have been on the receiving end of this kind of decision making multiple times, especially from my husband. My most recent example occurred in an interaction with a dear friend:

Over the last couple years, I have been mentoring this friend. I was, from the beginning, clear and honest about my physical time limitations but committed to communicating in alternative ways; and asked that if our relationship agreement ever stopped working because of these restrictive parameters, she not hesitate to approach me about her changing needs. We went into the partnership with what I thought was an equal agreement. Then, just a few days back, she abruptly let me know that our arrangement was no longer working and she had already found another mentor.

As much as I respect her needs, I was taken aback by the one-sided decision making. When pressed, she explained that she honors the physical place that I am in and would never want to put un-due pressure on me. So she found someone more “well-bodied” and flexible with their schedule. She thought she was coming from a place of loving-kindness.

But, in fact, she took equality right out of our equation. Out of concern for pressuring me, she took away my opportunity to know and express what is right for me. To check in with my own body and decide whether I could do more to meet her needs or not.

What was removed from our relationship was trust in the other person to know themselves, and respect for whatever decision they make. Regardless of our own opinion.

Let me highlight some ways we all do this in relationships:
– Our partner gets anxious in social situations, so we avoid telling them about upcoming engagements until the last minute, so they don’t unduly fret.
– Our parent worries when we travel, so we hide trips from them until we get home, as not to overly stress them.
– We have friends who have chosen to no longer drink, so we don’t invite them to events where there will be a lot of “celebrating,” so they won’t be tempted.
– A co-worker tends to react strongly when asked to do a project, so instead of giving them the chance to process and respond, we just do everything ourselves to avoid a possible conflict.

We tell ourselves “loving-kindness” stories: “I don’t want this (person I care for) to feel bad/sad/disappointed/stressed/worried…” We’ve already analyzed the situation in our heads, come to the conclusion of how the choice will negatively affect the other person, how they will respond, and what we will do to avoid this.

But, remember, when you make a choice for a loved one, you are no longer looking at them as an equal.

Those of us with chronic illness often struggle with feelings of being “less-than” (as many well-bodied folks do, too!). We already have to limit so many facets of our daily lives. But, we can still make conscious, thoughtful decisions for ourselves.

Doesn’t every adult want to be perceived as trustworthy of their own truth?

And the thing is. . .

We very well may make poor decisions! We may over-commit which over-taxes our bodies or minds.

BUT… that’s how we learn. How much is too much. And how much is just right.

If the right to make our own choices is removed, we are never able to find the balance on our own.

One of the worst things, is discovering after the fact that you could have been a participant in the decision making process, and that was taken away from you. It’s way worse to learn later that a group of friends went out dancing but didn’t invite you only because they didn’t want you to feel bad because your body is ill-equipped to dance right now. A much better scenario is to be given that choice and decide whether you want to sit and watch at the club or if it’s better to stay home, but it sure felt nice to be including in the invite!

So, next time you find yourself making a pre-emptive decision for another out of loving-kindness, try for a different approach:
– Tell that person about the choice and kindly express your concerns for their well-being.
– Let them know you trust them to make the right decision for themselves in that moment.
– Remind them that you’ll support whatever choice they make; and will give them the respect of keeping lines of communication and gentle observation open.

In all interactions, remember that a partnership means that each party is on equal ground.

Toeing The Elusive Line of Life

I am always trying to pin down that elusive line between doing too much and not engaging enough.  Dancing just over the edge into the land of “I am going to enjoy this adventure today even though I will ‘pay’ for it later” and standing at safe distance back, “forgoing opportunities for the sake of protecting my body from the ‘over-do’.”

To me this line is LIFE.

And I am not ready to give up on life yet; to fade into the background, observing others from behind my own personal protective observation glass.

Yes, this option ensures a more stable physical state of being. But it doesn’t guarantee it. I am just as likely to experience an unexpected (I was going to say “unplanned for,” but aren’t they all?!) flare of my physical symptoms after days resting “safely” on my couch.

And there is always one thing that suffers from my hesitancy to participate… my emotional well-being.

So it all comes down to another elusive concept: BALANCE.

I don’t think this is a plight just of the chronically ill.  We may suffer more serious consequences for misjudging our abilities to participate, but I know just as many well-bodied friends who also struggle with this.  Their “price” may just look different: stress, fatigue, or loss of time.

As I tiptoe around my Line of Life, I am getting better acquainted with my limits. For me, I know I will pay a steep price, so I weigh my options and choose the ones that are the most appealing and unique. 

I now pause before I make any commitment (I used to “over-commit” to everything for fear of saying no, only to have to constantly cancel at the last minute, frustrating everyone).

I check in with myself- mind, body and spirit.  I take my own set of vitals, so to speak.

And, no matter what my decision is, I try to clearly communicate with the invitee. I think the guidelines I have set up for myself can be applied to a wide range of situations and people.

It usually comes down to three categories:

1. “I’m sorry, I have to decline this time. But please don’t let this keep you from asking me in the future [big fear=being “forgotten”].  My physical well- or unwell-being is constantly fluctuating.” (insert your limits: time; commitments; family obligations; job stress; etc.).
2. “If it’s okay, I am going to have to wait and decide nearer to or on the day of.  I’m just not sure how I’ll be feeling from day to day right now and I don’t want to over-commit.”
3. OR: “I would love to accept! I am planning on being able to participate but if my body takes a down-turn, I may have to change plans at the last minute.  Are you okay with that?”

I have discovered that the honest approach best serves myself and others. Most of us want to “people please” and in doing so can create an environment of always saying “yes,” leading to feelings of stress and resentment later or a constant cycle of saying yes and then having to change our minds/plans.

By giving people an open look into your life, you are showing trust in the relationship.  As well, I try to always give people the option of letting me know if last-minute changes are uncomfortable for them.  Of course I wish everyone could be supremely flexible to my needs. But some cannot. And this is all part of accepting both my and others’ limitations.

You’ll also begin to discover the friends who truly do understand and are willing to adjust the typical “friendship guidelines” to maintain a relationship with you and those that are just “good time friends.” And that’s okay.

The week-end before last was one of those “seize the moment” opportunities for me.  A friend spontaneously invited me on Thursday to accompany her to Pittsburgh, PA for a one-of-a-kind puppet play by Heather Henson (Jim’s daughter- yes, The Muppets’ Jim!). Now, this was a huge risk for me. It was for just one night and would require a minimum drive of 6 hours both ways. Two “no-no’s” in my typical Boundary Box. But sometimes boundaries are meant to be broken, and this was one of those times.

Not only was it an amazing adventure and bonding experience with a dear girlfriend, it provided me a chance to be honest about my chronic illness in a way I have not before.  Traveling that close with some requires intimacy and vulnerability. And I was proud of myself for not hiding behind the mask of, “I’m okay.”

She knew I had to make many rest and stretch stops.  She saw my feet and ankles swell to the size of Nerf balls. She observed my nightly ritual of 20+ medications. She listened to me when I explained the complexity and history of my disease. She witnessed the “sudden coming” of a severe migraine. She saw me grow breathless because of my pericarditis (fluid around the heart) and the necessity of many “sit and rest” periods as we trekked around the city.

She saw the all of me. And she embraced and accepted me as I am.

Yes, I’m paying the steep price of admission still now 7 days post, but I wouldn’t have changed a thing about this experience. Can I always make this choice? No. But I am also not going to let my fears get in the way of considering similar spontaneous opportunities in the future. I used to always live my life this way… seizing crazy last-minute excursions left and right. And I forgot how much I love that.

I forgot what it is like to not only dip my toe over the edge into the Waters of Life, but to plunge head first into the icy chill of the thrill only to come up breathless by embracing the All of Life.

Where are you making choices in your life that serve not only your physical and mental needs, but also your spiritual and emotional needs? Perhaps you aren’t shying away from “frivolous experiences” because of the limitations of an illness, but because you are overwhelmed and stressed by the sheer complexity of living and balancing life, work and family.

Where and when can you throw caution to the wind, even for just an hour, and do something just for the sake of doing it?

Go on… life’s waiting for you!

An Award That Got Me In Touch With My Roots

I’ve been away from my blog for well over a week now.  It’s been a challenging week.  I recently read a blogger refer to her days as either “Green Light,” “Yellow Light” or “Red Light” Days.  She uses this as a communication system with loved ones. When the inevitable, “How are you” pops up, she can respond with the appropriate stop light… indicating: “Not too bad, proceed ahead,” “Rocky road ahead, proceed with caution” or “STOP! Body under repair, do not enter!”  Well, I’ve just come off a string of “Red Light Days.”

But after this rocky week, I returned to my blog to discover that I had been awarded not one, but three Blogger Awards!!  This is a huge honor and I am humbled by this gesture.  Not only was this a surprise in and of itself, but I received these awards from a blogger I wasn’t previously aware of.   Someone who just recently discovered my blog, and was so touched that she chose me for one of her ten nominations. Remarkable.

After the initial shock at receiving these awards faded, I started to buckle under pressuring thoughts: “What did I do to deserve these?” and “What will my next ‘inspiring’ entry be to live up to these nominations?!”

I forgot to stay in the moment and just feel the happiness and hope over receiving these awards.  To know that I have touched others as they have touched me is the true reward.  Especially coming form a new-to-me blogger… the “silent” readers who find comfort and connection in my words.

And, in the end, isn’t that the point of blogging?  Not to feed my own ego or to feed others; but to grow roots in a community of like-minded, supportive people.

When ecologists look beneath the surface of a forest floor, they discover an interconnected web that holds up the entire colony of trees.  One tree cannot stand alone (for long)… it needs its forest.  Just as I tried to stand alone with my own shallow roots for far too long; I was afraid to reach out my branches for help and to admit my daily struggles with chronic illness and pain.

Thanks in large part to the blogging community, I no longer feel alone.  Unlike Darwin’s theory of “survival of the fittest,” plants in a forest system do not survive individually.  They actually help each other survive.  They will share nutrients back and forth according to who needs it the most at any given moment.  And they will help each other withstand unexpected events (storms, fires, disease).  They do not discriminate; they help each other “inter-species.”

Not only do we provide a root system for one another, I feel like we all play the role of ecologist, as well.  We look beneath the surface (the “oh, but you look so good on the outside…”) to get to the root of things that lie beneath.  We accept each other (as I like to say, “warts and all”).  We trust each other.  We believe in each other.

And when one of us is too weak to weather the next inevitable storm, we hold each other up.  One day I hold you up, and the next day you return the gift with encouraging, validating words of kindness.  We remind each other why we need to stand strong and try again one more day at a time… why we should never give up.

Ecologist Suzanne Simard states, “AMAZINGLY, WE FIND THAT IN A FOREST, 1 + 1 EQUALS MORE THAN 2.”  Isn’t that also true of the WordPress Family?! (and our supportive readers!)

In my heart, these blogging awards are for each and every one of us; for every blogger who has the courage to tell it how it is, to be vulnerable, and to stand in their own truth.  I wouldn’t be here without all of you.  And I wish I could nominate all of you in turn…

I have been instructed to nominate 10 bloggers to pass these awards on to.  I want to be thoughtful in my choices… to recognize others as well as to give everyone an opportunity to explore a blogger they may not yet have discovered on their own.  As well, I want to think of the introspective questions I have been asked (as a nominee) and post those separately so you can get to know me even better.

In the meantime, I want to sincerely thank Life Beyond My Window (click for link) for passing these awards on to me.  And for giving me the opportunity to discover another inspirational blog!

Best Laid Plans . . .

If there’s one thing chronic disease has taught me, it’s flexibility!

Here we are all geared up for our Yurt Excursion and I come down with an awful stomach virus that completely disabled me.  There was no “grin and bear it;” I was so dehydrated and feverish I couldn’t even think straight, let alone travel.  So, once again, we have to attempt to re-schedule vacation plans.  A call is made to the “Yurt Man” and he informs us he has a strict “no cancellation policy.”  Mind you, the money has already been taken from our account.  And, for us, the cost of this mini-vacation is not expendable income! We worked and scrimped and saved to afford this get away.

Here marches in the messengers of “Doubt” and “Guilt,” followed closely by “Shame.”  My husband, in his frustration, begins to get upset… “Why do we always have to cancel our vacation plans?  Why do I even work, if we’re just going to have to throw away the money?!  We should just stop planning anything, and then I will have nothing to be disappointed about!”  Of course, I internalize these mutterings, and hear them as… “Your disease takes away all the enjoyment in life.  If it wasn’t for you always being sick, we could go away.  You and life with you are a disappointment.”  And here is the conundrum of the chronically ill and their caregivers.  He needed to be heard.   And I needed to be reassured.  And neither of us was wrong.  I felt deep shame over (almost) always being the source of our need to change plans at the last moment.  This time, it wasn’t even the illness we know, it was some random super bug either one of us could have come down with… it just happened to me.  And he felt disappointment, and in that moment, couldn’t see a way through the situation.  We both felt stuck.

Luckily we have a relationship built on trust and communication, tools honed through many years together.  I retreated into myself for a while and he did the same.   But I poked myself out of my protective shell and “risked” telling him how I was feeling.  He was able to pause and reflect on what was really making him upset.  I gave him the option of planning solo trips; I truly felt (and feel) that a compromise may look like us diverging on our separate paths at times.  But, he was not keen on this idea.  And let me know his disappointed lied in not being to taking a trip with me, not in the trip itself.  Phew!  Big sigh of relief, one I didn’t even know I was holding my breath on!

Once we both felt “heard,” we were able to reassess the situation and come up with alternative options.  The bags were already packed so why not wait out the virus another 12 hours and see if things look differently in the morning?  And, blessedly, they did!  I was still only about 65% but it was a doable percentage of health!  I am used to traveling “under par.”  We called the “Yurt Man” and had another prayer answered.  He told us we could extend our stay a night to make up for the night missed.  In the end, we ended up getting even more time there (extra hours on our arrival and departure days).

Because we’ve learned flexibility in dealing with my myriad of conditions, we were able to view all sides of the problem and come up with multiple solutions.  This is a gift of having chronic illness!  Most people aren’t challenged on a daily basis to constantly reassess their mood, physical ability, needed accommodations, time, energy and scheduled plans.  At times, this may feel like a burden.  But when posed with an unexpected challenge, you have the resources to think outside of the box!  That’s the gift.

Because we were flexible, I’ve just returned from four glorious days in nature.  Yurting was our first “adjustment,” providing us an outdoor camping experience with the luxury of a raised futon bed and even indoor plumbing!  And what a prize we received for searching for an unique vacation that would suit our needs… views of 80 acres all to ourselves; an abundance of wildlife (from Baltimore Oriels to Barred Owls to even an exotic blue hummingbird that buzzed right up each of our noses, to night coyotes and morning fawns… the list goes on and on!); an opportunity to take off the watch and forget about T.V.; moments to re-connect through Scabble and Yahtzee challenges and the nightly ritual of reading each other to sleep; and a chance for my first foray into Plein Air painting, interpreting the hills and mists and wildflowers from across my field of vision onto my canvas.

The blessing of replenishing the all of me ~ mind, body and spirit.

But the best gift of all?  The self-knowledge that just because I have chronic disease doesn’t mean I have to stop living.  It’s just one more example of how I am living differently.  Recently, my mom said to me that she feared planning a trip together, not knowing “what my body could handle.”  My gut response was, “I don’t know what my body can handle on any given day, in any given hour.  But I also don’t want to let the fear of that keep me from planning anything in my life!  People travel with all sorts of abilities and special needs.  I can’t wait to live my life until I feel better.  This is my life and I want to live it now!”

After this excursion, I truly believe those brave words I so brazenly declared!

LIVE YOU LIFE NOW!  WHAT YOU HAVE AND WHO YOU ARE, ARE WHAT YOU’VE GOT.  USE IT TO YOUR ADVANTAGE… NOT YOUR DISADVANTAGE! 

Go out and adventure and then let me know what you discover about yourself and what you can do!!