Coping With Long Wait Times

This is a topic that was liked by multiple people to write about - and it's such an important topic: 

How do you cope with long wait times to see a specialist? 

The short if it: 

I read, I prepare, I familiarize myself for possible outcomes, I set myself a gameplan, I get put on the sudden cancelation list, and then I do my best to put it all away until I finally get to see that specialist. 

I think one of the most prevalent aspects of dealing with chronic illness is the level of patience that a chronic illness patient needs to have. It's also a part of chronic illness that isn't very readily spoken about. 

With severe chronic illness comes trips to the ER. And yes, we really do need to go to the ER. We're not necessarily going to die within an hour, but there are treatments that need to be administered within a timely fashion that can only be done in a hospital. So we land in the mid-levels of urgency during triage - and we have to know and understand this. 

So we sit there - often in pain between 6-9/10, in the waiting room, knowing that we are lower priority than some but higher priority than others. This usually means an average wait time of 7-8 hours in the ER. 

It also means that we don't necessarily need an ambulance, so we either find another mode of transportation, or we drive ourselves (I can't tell you how many times I have driven myself or taken a cab to the ER). 

Again, more waiting. 

More tests on our patience. 

So then let's add to that theme: Specialists. 

It's a similar theme. 

As chronic illness patients, we often have various specialists. Each system that gets attacked or becomes a problem requires a new specialist - because finding a root cause for everything is out of reach currently. For instance, my current specialists include: 

• Gastrointestinal

• Ophthalmology 

• Dermatology

• Rheumatology

• Hematology

• Immunology

• Allergy

• Neurology

• Internal Medicine

• sometimes Psychology

And will soon include Ear, Nose, and Throat. Lucky me, I don't have to have an Obstetric-Gynecologist anymore since my full hysterectomy. I have also had to be seen by Endocrinology, Nephrology, Plastic Surgery, Pain Management Specialists, Naturopathy, Acupuncturists, Physiotherapy, Deep Tissue Massage Therapy, Chiropractors and likely others that I am forgetting. 

Again, I am a priority, and yet not. I need to be seen, but my conditions are rarely dire enough to be considered imminently dangerous. The last time a new specialist put me on a 'stat' list, some of my friends were discussing my potential upcoming funeral it was so dire. 

So we wait. 

There are a few ways that I handle the waiting. Obviously, keeping a medical diary is always a priority. I want to be prepared with all relevant symptoms and episodes while I wait, so that when I finally do get that appointment, I go in fully prepared. 

I also, VERY CAUTIOUSLY, do some reading. I'm not talking about WebMD or any diagnostic tool. If I happen to know what my doctors are thinking I *may* have or what they may test for, I find peer-reviewed clinical studies and information from reputable healthcare facilities. For some people, this approach may be a horrible idea. For me, it helps ease my mind. It allows me to prepare, mentally & emotionally, for a variety of outcomes, and how I might go about next steps. 

Then, once I feel like I have an adequate grasp on what could happen, I take steps (if I can) to avoid potential triggers or situations that would worsen a potential condition, but then I can safely put all of that information aside until I need it. 

I have found that if I don't do research, I catastrophize. Whereas if I know what the worst possible outcome is, I can have a gameplan in mind, ready to deploy if that really is the worst thing. 

Then, I monitor the symptoms for which I am waiting to see a specialist. 

I am very lucky in the fact that I have a phenomenal family doctor (which took a long time to find), and many of my established specialists have been with me for a decade or more. I have multiple healthcare professionals who I trust - who are in my corner. That means that I know if my symptoms worsen, I can make one or two phone calls and they may be able to get me in sooner - perhaps even in a different city. 

Another option for some would be support groups - whether online or in person. For me, personally, I cannot get involved with online support groups. But it can be a very valuable tool for coping with the wait and the 'what ifs' that arise from waiting. 

Another option that usually makes me feel better is calling the clinic and being officially put on a cancelation list. Depending on if you're working (and if your job is aware of your situation) or if your schedule is really flexible, being put on the cancelation list is always a good idea. For me, I know that if I get a call for an earlier appointment, I could get to that appointment in as little as 30 mins on any given day. That is a huge benefit for when patients have had to cancel due to traffic, weather, sudden illness, or other extenuating circumstances. 

If you have any other tips for coping with long wait times, I would love to hear them & share them! 

Having patience when we are freaking out about a new symptom is really difficult. Logically, we understand why there is a wait time, but inside our minds are screaming "HELP ME!" ... As we try to function as best we can.