Validating an Invisible Illnesses

Validating an Invisible Illnesses

by | Jun 12, 2024 | Invisible Warriors

Validating an Invisible Illness

Kathy had been feeling really rundown and achy for months. She went to see her primary care doctor multiple times, but each time the doctor dismissed her concerns saying things like, “You just need more rest” or, “It’s probably just stress.” Thus her journey for validating an invisible illness began.

She knew something wasn’t right, though. The fatigue and pain she felt was not normal. But the doctor made her start questioning herself and wondering if maybe she was just being dramatic.

Trying her best to push through and live a normal life, it became harder and harder. Simple tasks like going to work, cleaning the house, or running errands left her utterly exhausted.

Finally, after nearly a year of suffering, Kathy found a new doctor. She explained all her symptoms – the fatigue, body aches, brain fog, and more. This doctor actually listened. They ran some tests and eventually diagnosed her with fibromyalgia, a chronic condition that causes widespread musculoskeletal pain and fatigue.

Finally relieved to have an answer, she was also frustrated that she had been dismissed and gaslit by previous doctors who made her feel like her very real symptoms were just in her head. With proper treatment and management, her symptoms became more under control, but it was a long journey to get the care she deserved.

Asserting Your Rights as a Patient

Self-advocating at the doctor’s office when they are not listening or taking your illness seriously can be extremely frustrating, but it’s important to persist if you have any chance of validating your invisible illness. Here are some steps to follow:

Come Prepared
• Keep a detailed symptom journal tracking when issues occur, their severity, triggers, etc. Having concrete data helps validate your experiences.
• Bring research on your suspected condition from reputable sources to educate the doctor.
• Make a list of your key concerns and questions so you don’t get flustered and forget anything important.

Be Respectfully Assertive
• Don’t minimize or downplay your symptoms. Describe their full impact on your daily life.
• If the doctor dismisses you, respectfully reiterate the facts and that you need them to take this seriously.
• Ask them to specifically explain why they think your symptoms are due to another cause.

Bring Support
• Having a spouse, friend or family member attend appointments can provide a second voice corroborating your symptoms.
• They can also take notes, ask questions you may miss, and advocate on your behalf.

Know Your Rights
• You have the right to view test results and records to ensure critical information isn’t missed.
• You can request a second opinion, either from another doctor in the same practice or elsewhere.
• If you feel you’re still being dismissed, you can change practices entirely. Your health is priority.

Self-advocacy takes persistence, but don’t give up until you find a doctor who truly listens. Getting a proper diagnosis and treatment plan can make a life-changing difference for your well-being.

Ways to Better Explain What’s Going on in Your Body

Sometimes we aren’t clear enough about what we’re feeling. Here are some examples of how to clearly and effectively describe your illness to a doctor:

Symptom Details
• “The fatigue I experience is completely debilitating. Even after nine hours of sleep, I wake up feeling just as drained as when I went to bed.”
• “The joint pain and stiffness is worst in my knees, hips, and hands. It’s severe enough that some days I can barely get out of bed or grip objects.”
• “I get dizzy spells and headaches almost daily, usually worsened by standing for too long.”
• “I’ve noticed this red, butterfly-shaped rash comes and goes on my cheeks when I’ve had a symptom flare.”

Impact on Life
• “This illness has caused me to miss 12 work days in the last two months because of symptom severity.”
• “Simple household chores like vacuuming or doing laundry leave me utterly exhausted for the rest of the day.”
• “I’ve had to stop exercising and attending my weekly tennis matches, which was a big stress-relief activity for me.”
• “My symptoms make it difficult to concentrate, so I’m struggling in my college courses right now.”

Tracking Patterns
• “I’ve noticed I tend to have flare-ups of muscle weakness and fever about a week after getting a virus like the cold or flu.”
• “My symptoms seem to be cyclical – they’ll be manageable for a couple weeks and then I’ll have an intense flare that lasts 7-10 days.”
• “Certain foods like gluten, dairy or alcohol appear to trigger more joint pain and brain fog within 24 hours after eating them.”

Using descriptive details, keeping a log, and quantifying the impact can all help the doctor better understand your unique condition. Don’t hold back – honest communication is crucial for validating your invisible illness.

Validating an Invisible Illness

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Come to the Table with Dr. Ann Hester, MD

Come to the Table with Dr. Ann Hester, MD

by | Apr 29, 2024 | Events, Invisible Warriors

Come to the Table with Dr. Ann Hester, MD

You are warmly invited to join our regular event, Come to the Table, on Wednesday, May 15, 2024, at 12:00 ET/11:00 CT. This peer support group is part of the Invisible Warriors Club where women feel loved and supported, valuable and worthwhile. All women are welcome.

Special guests, discussions, and training about ongoing invisible illnesses and autoimmune disorders provide a sense of not being alone. At Come to the Table, we talk about all things life and invisible illnesses, but in a kind and uplifting way – never moaning and groaning.

This month we have as our special guest, Dr. Ann Hester, MD, Internal Medicine Specialist with 30+ years in practice. Dr. Hester’s passion is patient empowerment. For over two decade, she has worked diligently to educate healthcare consumers on powerful, easy-to-understand methods to optimize their health (and their health care) and lower their medical bills. Dr. Hester is also the author of Patient Empowerment 101. (Learn more HERE.)

Dr. Hester is also a syndicated columnist as part of the Price of Business Digital Network. Patient empowerment is her theme, of course. “What else could it be? Few things in life are as motivating and satisfying as empowering people to live stronger, longer lives,” says Dr. Hester in her LinkedIn profile. (Follow her on LinkedIn HERE.)

Topics for this Come to the Table include:

  • how to better prepare for upcoming doctor visits
  • optimize doctor-patient communication to optimize your care and save money
  • how to be “respectfully assertive”
  • the importance of having a health advocate

Come to the Table online with Invisible Warriors founder Nancy Becher and Dr. Hester on Wednesday, May 15th by clicking HERE to join the Zoom at 12:00 ET/11:00 CT.

Come to the Table with Dr. Ann Hester

Want to know more about Invisible Warriors? Sign up for our newsletter to receive regular updates. Contact us HERE. Or click the button below to schedule a meeting with Founder Nancy Becher!

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Ways to Avoid Medical Bankruptcy

Ways to Avoid Medical Bankruptcy

by | Apr 3, 2024 | Invisible Warriors

Ways to Avoid Medical Bankruptcy

Forget about the pain and medical challenges of ongoing invisible illnesses and autoimmune disorders for a moment. Consider that one of the biggest issues an Invisible Warrior has to face is the actual cost of being sick. Insurance coverages that don’t cover what you think they should, doctors who bill incorrectly, and exorbitant costs of medical procedures in general can all add up to an all-too-common problem today: medical debt. Or worse, medical bankruptcy.

This article from Advance America gives some great information to help you understand how to negotiate medical bills, reduce hospital bills, and cover your medical bills. CLICK HERE to read it.

One thing this article is no longer completely accurate about is that medical debt is no longer going to go against your credit. However, that’s not to say it’s okay to just not pay your bills. If you owe them, you need to figure out a way to pay them; however, do what you can to reduce them upfront.

(The author is not an accountant, a doctor, or an attorney. Consult your financial advisor about your financial circumstances, your doctor about your medical situation, and your lawyer about any legal issues.)

Ways to Avoid Medical Bankruptcy

Invisible Warriors

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The Trouble with Hotels

The Trouble with Hotels

by | Mar 25, 2024 | Invisible Warriors

The Trouble with Hotels

Now that the weather is warming up, people are getting back out on the road and heading for vacations, business, and travel in general. There are often many hassles along the way – airports backed up and planes not flying on time, gas prices are higher than we’ve seen in many years, and the cost of EVERYTHING has skyrocketed. But we don’t generally think of trouble with hotels as being high on the list of potential problems. Yet for those of us with chronic illnesses, autoimmune disorders,  or invisible disabilities, we often find that in fact, accommodations when traveling can be a nightmare.

Not long ago, my husband and I made a trip to New Orleans to visit with a family member that we’d never met before and were super excited for this trip. The hotel was in the middle of the French Quarter and was quite an old building but had been recently renovated – or so we thought. I had made reservations months in advance to make sure that we would have the perfect vacation. I requested a handicapped room with a roll-in shower on the first floor where I could get my electric scooter in and out with no problems.

The first floor was because if there was a reason (like a fire) and the elevators didn’t work, I could get out of the building. I wouldn’t be able to get out in time if I had to take the stairs. The roll-in shower necessary was because I can’t lift my legs to get them over the side of a tub even if there’s a handlebar to hold on to. I have fallen in and out of tubs and have broken my wrist and ankle as a consequence. These requests to me were simple and easy to understand. The reservationist told me that my requests would be fine and that all had been taken care of. I need not worry.

The hotel troubles begin

However, when we got there, we were given a key to the third floor as far from the elevator as you could get. It was difficult to get both my husband and me in the room, let alone my scooter. Going back downstairs to ask why this had happened, they told me there were no rooms available other than this one – take it or leave it. We took it.

We had to leave the scooter parked downstairs in the check-in area and get my push wheelchair out of the trunk. Getting into the teeny-tiny lift, the footrest got caught in the elevator door, and it wouldn’t open. We were stuck for a half hour until my hubby was able to wrangle the footrests off the chair. The door laughed at us then and slid open. I had to hop into the room while the chair was folded up outside and carried in. it had to be placed behind the door which made it very hard to open the door to either get in or out of the room.

When we wanted to leave the hotel, we had to set up the wheelchair again (we just left the footrests in the room, not willing to risk getting stuck in the elevator again) and my hubby pushed me to the elevator and down. We then switched the chair for the scooter and we were off. We reversed the process coming back.

The shower was another thing. While it did have the roll-in feature, the floor was ceramic tile (very pretty but also VERY slippery). I had to have hubby hold me up while I was in there (and the bathroom was also VERY small).

The final straw was the fact that I am allergic to strong smells and have serious asthma attacks where there are colognes or other scents in the air. We walked into this room and it immediately sent me into a coughing and breathing calamity because the smells of cleaning products were so strong. Yes, it was nice that the room was sanitary and clean, but it took two of the seven days we were there to get the smells out. This was because they never came back to provide clean towels or pick up used linens.

It was a nightmare

All in all it was a nightmare. We had a great time, but no thanks to the hotel. We will never stay there again. Sadly, my story, while actually funny now, back in June of 2020 was not funny at all. The hotel blamed their errors on corporate reservation takers and “gifted me” with a 2000-point bonus. The room was $250 a night and you needed like 120,000 points to exchange if you didn’t want to pay cash.

This is not the only time I’ve had issues and I know many other people (both those with and without medical challenges) that have had nightmare experiences in various different hotels around the country. There are government rules such as the ADA that are supposed to help with these situations, but the hotels either take their chances, or work around the laws in one way or another. It is going to take campaigns against them on social media, commenting on their websites, writing to your congressperson, and helping organizations such as Invisible Warriors to fight these battles so that we can enjoy our vacations and traveling experiences, feel safe and want to go back again.

This article by Rebecca Theim shares the troubles and remedies of many travelers with hidden chronic and autoimmune disabilities. If we all take a stand and share our voices, things will change. Working together, we can help eliminate some of the troubles with hotels.

When you are traveling, ask lots of questions when making your reservations, get the name of the person you are speaking with, and make sure that you know your rights. I hope you have a wonderful trip!

The Trouble with Hotels

 

Want to know more about Invisible Warriors? Sign up for our newsletter to receive regular updates. Contact us HERE. Or click the button below to schedule a meeting with Founder Nancy Becher!

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10 Realistic Goals for Invisible Warriors

10 Realistic Goals for Invisible Warriors

by | Mar 19, 2024 | Invisible Warriors

Realistic Goals for Invisible Warriors

We all have those little voices chattering away in our heads telling us, “We’re not good enough,” or that we screwed up again. I know I have to hold conversations with myself daily to make sure they don’t get top placement and my positive thinking crowds out the negative. In other words, I try to have realistic goals for myself.

For those of us with chronic pain and depression, the negative Nelly voices are that much louder, thanks to the real voices of people in our lives who don’t believe our illnesses are real. Or that we’re exaggerating them.

At times, it can get so bad that we start to believe that these things are just in our heads and that we’re going crazy. I know I will be discussing something with my husband, he’ll question what I’m saying, and I have to stop and think, “Maybe he’s right,” although I know full well what I’m saying is correct. He doesn’t mean to be negative, but my poor little brain has to step back and take a minute to realize that I was on the right track all along and stay confident.

This blog post was inspired by the December 2021 Disabled Diva Blog by Cynthia Covert about setting realistic goals, particularly at the new year. Her points apply all year round.

If you’re one of the millions (133m American women) who have some form of chronic illness, autoimmune disorder, or invisible disability, try and pick at least one idea and make it a part of your life.
If you all have other ideas and strategies, please share them in the comments.

Realistic Mental Health Goals For Women with Invisible Illnesses and Disabilities

1. Forgive Yourself

Make it a goal to forgive yourself when you screw up. It’s going to happen. We’re all human, so we all make mistakes. Do what you can to make it right and allow yourself to move on.

2. Unfollow Negativity

If you follow people on social media who cause you unnecessary stress, anger, or sadness, it’s time to let them go. Reading negative posts or comments can affect your attitude. Remove people who are affecting your mental health from your feeds.

3. Stop Blaming Yourself

Not every flare is your fault. You didn’t cause your invisible illness or disability, and if you’re like most Invisible Warriors, you can’t really control it, either. While we can manage our symptoms, we can’t get rid of them. Let your illness take the blame for the flares and not you.

4. Don’t Compare Yourself

This is one thing that can seriously compromise your mental health, so do not compare your life to others. For one thing, they might be suffering from an invisible disability or illness, too, and you just don’t know it! We’re all on different journeys. Focus on what you CAN do, not what others are doing. And celebrate your successes!

5. Try New Things

Some medicines or doctors just don’t work. That’s when it’s time to try something new. Talk with your doctor about alternative options, including more holistic or natural treatments.

Having trouble getting around? Use a mobility aid. Be creative. Maybe find a cool walking stick instead of a boring cane. But choose one that helps you do more without the risk of falling or more pain.

Don’t give up just because what you’ve tried so far hasn’t helped or worked for you yet. Keep trying!

6. Determine to Complain Less

Have you ever stopped to consider how often you complain about your situation? One way to know it’s too much is if people’s eyes glaze over when you start talking about how things are going. Time to stop!

Reframing your thoughts by replacing negative, complaining ones with positive thoughts is a good way to tame the temptation to share all your difficulties with everyone you meet. I don’t mean that you go overboard on positivity, but focusing more on the positive will make you feel better, too. We can all always find at least one thing to be thankful for.

7. Decide to Exercise Daily

No matter what exercising looks like for you, there’s something for everyone. If you can’t run, take a walk. If you aren’t up to an aerobics class, try something at a slower pace like stretching and resistance exercises. If you are fortunate enough to have access to a pool, it’s one of the best ways to get low-impact resistance exercises and feels so good when you’re done. The point is, do something every day to move your body in some way. You’ll feel better.

8. Prioritize Your Health

Self-care is important for all Invisible Warriors. We need to not only see our doctors and follow the treatment plans they give us, but we also need to take time to care for our mental health. Pushing ourselves too hard physically or mentally is a good way to end up in an ER. Love yourself as much as you love the most important people in your life so you can be at your best as much of the time as possible. Spend your “spoons” wisely.

9. Focus on What You Can Do

It’s very easy to focus on what we can’t do as Invisible Warriors but those are things we can’t change and instead take us to dark places in our minds. Instead, we should focus on the things we CAN do. Thinking that way sometimes helps us identify alternative solutions to the things we can’t do.

Life isn’t over because of your invisible illness. It’s just different. What’s something new you can try now? Maybe you have more time resting so you can read books or take online courses to learn new things.

10. Plan Everything with your Invisible Illness in Mind

It will take time to learn if you are newly diagnosed and still figuring out your limitations, but once you have stepped over that obstacle, planning with your limitations in mind will help you live a full life in spite of them and not cause flares that slow you down.

Which realistic goals will you try to add to your life?

Invisible Warriors can help. We have a private community called the Invisible Warriors Club where we come together to discuss our challenges and share our successes and discoveries about living with chronic illness, autoimmune disorders, and invisible disabilities. We welcome you to join us! It’s a low $10/month donation to our nonprofit which helps us advocate more with the hospitality and healthcare industry as well as government agencies to help our Invisible Warriors get the care and accommodations they need not just to survive but thrive. Click the button below to join!

Join the Invisible Warriors Club!

10 Realistic Goals for Invisible Warriors

 

Want to know more about Invisible Warriors? Sign up for our newsletter to receive regular updates. Contact us HERE. Or click the button below to schedule a meeting with Founder Nancy Becher!

Schedule a meeting with Nancy