When I was first diagnosed with lupus, I asked my rheumatologist if she recommended I attend a patient support group. Her answer surprised me; she said ‘no,’ and explained that the experience might frighten me or make me depressed.
Eventually, I did attend a support group, and I saw what she meant; there was an odd sort of competition among a few of the attendees, with one person explaining how “bad” her flare was, and another insisting hers was more serious. I’d never thought of illness being competitive, but there it was!
Fortunately, also at that first support group, I met a woman who is, still today, one of my closest friends and “lupus warriors.” There’s no competition between us, but rather an eagerness to learn from one another (although I would say I’ve learned more from her longer experience than she might have from mine!). So, I am happy I went.
But, also, I have to say that the support group experience was not one that I stayed with. As I lived further on with lupus, I made more personal friends and the need for a group experience waned. Also, I found I was uncomfortable with the competitive nature of some of the patients; I am very competitive in some respects – when it comes to African violet shows, for example, or playing games such as tennis – but not when it comes to health matters. Those are not a “race” against someone else, and I sure don’t need to prove that my illness is “worse” or “better” than another patient’s.
For me, the competition vis-a-vis my disabilities is myself against my illness. How can I take these health challenges, for example, and not allow them to degrade my spirit. That, to me, is the appropriate kind of competitiveness I as a patient need to have.
There will always be people who insist their suffering is “worse” than someone else’s. I try to distance myself from them (while still being compassionate) because their sense of competitiveness tends to sap the energy from where it really needs to be: within myself, against the constraints that lupus oh-so-constantly tries to place upon me.
No, it’s not a typo. I know that the book and movie are called, “Far from the Madding Crowd.” But this post is about us and groups – when we find ourselves in a crowd and it’s maddening for us because, well, if many individuals do not understand what it’s like to have chronic pain, crowds can be absolutely clueless!
Besides the jostling, bumping, and elbowing that occurs when crowds are on the move, there can be a tremendous sense of isolation when crowds are confined to one place. Recently, I was in a large room where there was a large crowd. I happened to see an older woman sitting alone in a chair along one of the walls. I went over to her, and the first thing she said was, “I don’t like noise, and I don’t like crowds.” Clearly, she wanted to be at the event, but the circumstances were, at best, a difficult challenge.
As I have said many times, even if we have health issues that hobble us, we are still meant to be part of the world, including the world outside our protective walls. So how, then, can we better manage being in those often-maddening crowds?:
Bring an advocate with you. This is someone who can run interference for you as you move about in the crowd, and also help navigate food tables, restroom lines and other challenges.
Investigate getting a disability-accommodating seat at an event such in a concert hall or arena. Often these are more protected than general seating arrangements.
Save an extra seat so that those who wish to can sit beside you and talk. When a crowd is noisy, it’s very easy to strain you neck and voice trying to talk with someone while you are sitting and they are standing.
Bring some kind of visual “prop” that indicates you might need a wider berth. I have terrible arthritis in my knees, and it is impossible for me to negotiate stairs. But otherwise, my disability is invisible – unless I have a cane (which I do bring while traveling through crowded locales, such as airports).
Avoid standing or sitting near a restroom door or hallway, buffet table or the trash recepticle because there will be more foot traffic there.
Pactice what you’ll say if someone refuses to move out of your way or otherwise denies you an accommodation for your disability (especially if it’s invisible). This will help you not respond in heated anger, but rather advocate for yourself firmly and precisely.
When you enter a room, immediately note where the exits are and try to remain closeby one of them. In an emergency, a crowd can surge and become potentially harmful, and it is usually better to be near an exit so you can leave more quickly, ahead of the “mob.”
These are just a few of the things that I’ve found helpful. You might have some of your own, which I invite you to share!
More than once, I’ve heard of people to whom doctors have delivered a dire prognosis – “You have 6 months to live.” “You have, maybe, a year.” “You have, at most, three years – the last of which will be terrible.”
And, know what? I’ve also heard of people who have lived far beyond these guesstimates, defying the best of medical opinions!
Not everyone will overshoot the timeline set forth by oncologists, surgeons, and others. But there are enough examples to encourage us to think in a different way about the time we have left. Do we sit back and count the days carefully, calculating our lives into mathematical equations?
Or, do we approach each day as a gift and unwrap it eagerly, like we did as children, arising ready for whatever wonder and awesome-ness God will reveal to us in that day, that now?
And we don’t have to have a terminal illness to do this. For anyone planning a grand life event (wedding, vacation, graduation, new job), often we get caught up in counting the days between then and now there, too, forgetting that there’s a whole lot of life to be lived in between. Or, perhaps we count the days relating to someone else’s life – a child’s reaching the age of 18, a toddler finally able to get dressed on his or her own – and we gloss over the “in between” when true wonder, even miracles, can happen so quickly that we’ll miss them if we’re not tuned into the now instead of the then.
As long as we are alive, we are living – not in a cliched sense, but in a very physical, emotional, and spiritual way.
If we spend that life counting our days until something, we’ll really miss out on so much in the meantime! But if we slow down, refocus, and seek what God is offering us now, well, talk about a pile of presents just waiting to be opened!
There is an appointed time for everything,
and a time for every affair under the heavens…
Ecclesiastes 3:1 (NAB)
With that simple sentence begins one of the most-quoted set of verses from the Bible. We know many of them by heart…”A time to be born…a time to die,” “A time to weep…a time to laugh,” etc. But as balanced as these verses are, so often when you live with a serious illness or awful pain, our focus lands squarely on the more negative part of each of the verses. Yes, as we try to make sense of our lives peppered with health challenges, we try to understand the times when we “rend,” “tear down,” “feel pain,” “lose [health].”
And we forget the other end of the seesaw – that which is positive!
Just because we hurt or have a chronic illness does not mean that the pleasant, lovely, delightful, joy-filled parts of life are off-limits for us. And just because we are deeply scarred from our disappointments and frustrations does not mean that God withholds that which is positive from us. Often, we do not feel delight, joy, or pleasure because we do not allow ourselves to do so. And often we do not allow balance to ease our suffering so that along with our pain, we do feel love and find comfort.
As I’ve become more aware of the possibility of Ecclesiastes-like balance in my life, I’ve found more of it. And what a relief that is! Truly, my perspective on the ordeal of living day-to-day with illness is greatly enhanced by knowing that God also allows great blessings of a joy-filled kind, yes, even if there are dark clouds hovering overhead.
Truly, the more we are attuned to balance – emotional, physical, spiritual – the greater our lives grow, mature, and blossom!
Joy and peace,