What Is Happening to Me?

There was probably a time when you didn’t spend much time thinking about how you felt.

That doesn’t mean life was easy. You had bills to pay, people who depended on you, problems at work, children to raise, relationships to maintain and all the ordinary pressures that come with being alive. You got tired. You got stressed. You got sick occasionally. You had good days and bad days.

But most of the time, you trusted yourself to handle whatever the day brought.

You didn’t appreciate that trust because there was no reason to think about it. You could make plans for next weekend and assume you’d be there. You could take on a project at work and know you’d figure it out. You could promise your child something and expect to keep that promise. When somebody asked how you were doing, the question didn’t require much thought.

Then something changed.

Perhaps the change was dramatic, or perhaps it happened so gradually that you can’t identify exactly when the person you had always known began feeling unfamiliar. Either way, there comes a point when you realize that you’re paying attention to yourself in a way you never did before.

You aren’t doing it because you want to. In fact, you would probably give anything to stop thinking about how you feel.

You want to wake up and think about coffee. You want to worry about being late for work. You want to be annoyed because the dog needs to go outside or because one of the kids forgot something at school. You want ordinary life to occupy your thoughts again.

Instead, you can wake up wondering how much of yourself you’re going to have available that day.

That changes more than people realize.

You Know the Person You Used to Be

Nobody knows your normal as well as you do.

You know how clearly you used to think and what your energy normally felt like. You know how much you could accomplish before you became tired. You know how you handled stress, how well you remembered things and how quickly your mind normally worked.

When that begins to change, it can be frightening even before anyone else notices.

Perhaps you’re halfway through a conversation when a familiar word simply won’t come to you. You read something and realize that although your eyes moved across every sentence, almost none of it stayed with you. Something you’ve done hundreds of times suddenly requires concentration.

One incident doesn’t mean much. Everybody forgets things. Everybody gets tired.

What frightens you is that you know the difference between occasionally forgetting something and not feeling like yourself.

You may begin quietly compensating. Writing things down becomes more important. You double-check something you would once have trusted yourself to remember. Decisions take longer because you no longer have quite the same confidence in your judgment.

Nobody necessarily knows you’re doing any of this.

From the outside, you may still look remarkably normal.

You may still be going to work. You may still be taking care of your family and answering the phone. People see you standing in front of them and assume that what they see represents how you’re doing.

They don’t see the effort.

There are people who become extraordinarily good at looking fine because life hasn’t given them permission to stop functioning. The children still need breakfast. The business still has to open. The mortgage still has to be paid. Somebody is expecting you somewhere, and you’ve always been the person who showed up.

So you show up.

But you know what it cost you.

Over time, that difference between how you appear and how you actually feel can become a lonely place to live.

Doubt Has a Way of Finding Its Way In

Most people don’t immediately assume something serious is happening to them. There are too many ordinary explanations for not feeling quite right. Life can exhaust anyone. Stress can affect us in ways we don’t always recognize, and getting older brings changes of its own.

For a while, you expect things to straighten themselves out.

You rest. You try to sleep more. You push yourself because pushing through difficult periods has worked before. You tell yourself that after this week, after this project, after you get some rest, you’ll feel more like yourself again.

Then time passes and you don’t.

At some point, the uncertainty stops being only about what is happening physically. You begin questioning your own interpretation of it.

That’s a difficult thing to admit.

Someone who has trusted their own judgment for decades can suddenly find themselves wondering whether they’re making too much of what they’re experiencing. When nobody can immediately give you an explanation, it becomes surprisingly easy to turn the uncertainty back onto yourself.

That self-doubt becomes much harder when the people around you are also beginning to doubt you.

When the Person Who Knows You Best Doesn’t Understand

This is something we’ve seen happen to families, and it can be heartbreaking.

Two people can share a home and a life and still have completely different experiences. One spouse may be struggling profoundly while the other feels perfectly fine.

The person who feels fine has their own reality. They wake up in the morning and don’t experience what their partner is describing. They may look around and see nothing that explains why someone they love has changed so much.

At first, they may be worried.

As weeks turn into months, worry can become frustration. They want their husband or wife back too. They don’t understand why that isn’t happening. They may begin to wonder whether fear itself has become part of the problem.

Eventually, the affected person may hear words they never expected to hear from the person they trust most.

Perhaps this is anxiety. Perhaps you’re becoming consumed by it. Perhaps you need to stop thinking about it so much. Perhaps you need psychiatric help.

Sometimes the spouse saying those things genuinely believes they’re helping.

But imagine receiving that message when you’ve already been privately questioning yourself.

Now you aren’t only trying to understand what is happening to you. You’re trying to convince the person you love that something is happening at all.

We’ve walked into homes where that tension was already there. Sometimes what begins as a conversation about an environmental concern becomes something much more personal because it becomes obvious that two people who love each other are hurting in completely different ways.

There have been times when a husband needed to hear very clearly that the fact that he felt fine did not mean his wife couldn’t genuinely be struggling. The same can happen in reverse.

That conversation matters.

It does not establish what caused someone’s illness, and it does not mean that mental health concerns should ever be dismissed. Depression, anxiety and other mental health conditions are real and deserve appropriate care. But cognitive or emotional changes do not automatically mean that everything a person is experiencing is imaginary. Illness, disrupted sleep, prolonged stress and some environmental exposures can affect the way people think, feel and function.

There is an especially painful cycle that can develop when somebody feels they aren’t being believed. They try harder to explain themselves. They become frustrated and emotional because the person closest to them doesn’t understand. That emotion is then interpreted as further evidence that the problem must be psychological.

Eventually, some people simply stop talking about it.

They aren’t feeling better.

They’re tired of defending themselves.

There are few things lonelier than feeling that you have to prove your own experience to the person lying beside you at night.

Sometimes Your Children Are Watching You Change

Being a parent adds another kind of pain because children notice much more than adults sometimes realize.

They may not understand why Mom doesn’t have the energy she used to have or why Dad isn’t doing something they always did together. They don’t know why you’re distracted or why you don’t have as much patience at the end of the day.

They simply know something is different.

For a parent who is already struggling, seeing that difference reflected in a child’s face can be crushing.

You can love your children every bit as much as you ever did and still have less of yourself available to give them. The guilt that comes with that can become another burden you carry quietly. A missed game or a canceled afternoon can hurt far more than the child will ever know because you’re comparing the parent you are able to be today with the parent you remember being.

For other families, it is the child who has been struggling.

A parent may spend months or years taking a child back and forth to medical appointments. They follow the doctor’s advice, fill the prescriptions and do everything they’re supposed to do because that’s what parents do.

Sometimes the individual problems are treated without anyone ever looking closely enough at the environment surrounding the child.

That isn’t an argument against medicine. A child who needs medical treatment needs medical treatment. Conventional medicine saves lives every day. But treating a child’s illness and asking whether something in that child’s environment could be contributing to it should never have to be competing ideas.

When a parent eventually discovers that there may have been an environmental piece nobody considered, the emotional impact can be enormous.

Suddenly, the past looks different.

Those appointments, sleepless nights and periods when the child wasn’t doing well can take on a new meaning. Parents can become angry that nobody asked more questions, and then turn that anger against themselves because they didn’t know what questions to ask either.

A parent can carry tremendous guilt over something they had no reasonable way of knowing.

That is part of this experience too.

There Is a Wide Distance Between Struggling and Not Being Able to Function

Not everyone affected by an environmental exposure experiences the same degree of illness.

Some people continue working and caring for their families while quietly struggling every day. They may hide what they’re experiencing so effectively that people around them have no idea how difficult life has become.

Other people become profoundly impaired.

There are people who once lived active, independent lives who reach a point where much of the day is spent in bed. Taking a shower can consume what little energy they have. Preparing food may become difficult. A conversation can feel exhausting. Someone who once took care of everybody else may suddenly need someone to take care of them.

That reversal can be devastating.

It is one thing to accept help when you’ve always needed help. It is something entirely different to have spent your life being fiercely independent and suddenly find yourself dependent on your spouse, your parents or even your children.

At first, you may still expect tomorrow to be better.

But when enough tomorrows arrive and you still don’t recognize your life, it can become difficult to imagine the future.

This is where depression can become very serious.

A person who is profoundly ill may not be able to picture the happy future everyone else wants them to believe in. If getting out of bed feels overwhelming today, imagining yourself on vacation next summer may feel almost absurd.

That doesn’t mean the person has stopped loving their family. It doesn’t mean they’ve stopped wanting a life.

Sometimes they simply can’t see that life from where they are right now.

Telling somebody in that place to think positively can feel almost cruel. Hope cannot always be demanded from someone who is exhausted just trying to make it through the day.

Sometimes the person doesn’t need encouragement about next year.

They need someone to understand today.

Relationships Don’t Usually Break All at Once

Illness can slowly alter relationships in ways nobody intended.

Friends may care deeply about you and still begin seeing less of you. You cancel because you don’t know how you’re going to feel. Eventually they stop asking as often, not necessarily because they stopped caring, but because everybody’s life keeps moving.

Sometimes you’re the one who withdraws.

You get tired of explaining yourself. You don’t want every dinner to begin with somebody asking how you’re feeling. You don’t want sympathy to become the foundation of your friendships.

You want to hear somebody complain about traffic.

You want to argue about a hockey game.

You want to laugh about something stupid.

You want an evening where nobody asks about your health.

There can be something surprisingly painful about listening to other people complain about ordinary problems and realizing how badly you would like some of those problems back.

Not because they weren’t real problems.

Because you remember being able to handle them.

Intimacy with a spouse can change as well. When someone hasn’t felt comfortable in their own body for a long time, physical closeness may become difficult. Exhaustion, fear, depression and the strain already present in the relationship can create distance where there was once very little.

The partner may experience that distance as rejection.

The affected person may experience it as one more thing they’re failing at.

Neither person wanted any of it.

Yet both are living with it.

A Career Can Be Part of Who You Are

For many people, losing the ability to work normally cuts much deeper than losing a paycheck.

Imagine spending twenty or thirty years becoming excellent at something and suddenly finding it difficult to do.

Your career may be where much of your confidence came from. People relied on you. You were the person who knew the answer, fixed the problem, remembered the details or made the decision.

Then things that were once automatic require concentration.

Maybe you make a mistake that bothers you far more than it bothers anyone else because you know you wouldn’t have made it before. Perhaps you need more time to finish something. You miss work because there are days when you simply cannot do it.

From the employer’s side, there are still schedules, deadlines and responsibilities. Coworkers still have work that needs to be done. The world of employment does not always have much room for an illness that is difficult to explain and impossible for somebody else to see.

Some people eventually lose opportunities. Others reduce their hours or use every sick day available to them. There are people who ultimately lose jobs they desperately wanted to keep, and there are people who walk away from careers they spent most of their adult lives building because they can no longer do what they once did.

That loss can reach directly into someone’s identity.

The person who provided for the family may now depend financially on their spouse. The business owner may watch other people make decisions they once made themselves. Someone who has always been proud of never needing help may now need help with ordinary things.

You can know intellectually that needing help doesn’t make you less valuable and still feel the loss of independence deeply.

Sometimes you begin to feel like a burden even when nobody who loves you has ever called you one.

You May Not Like the Person You’re Becoming

There may come a point when you realize that all of this has changed more than your health. It has changed the way you react to people and sometimes the way you feel about yourself.

You may find yourself becoming angry over things that once wouldn’t have bothered you nearly as much. Sometimes that anger comes out with the people closest to you, even though they aren’t really the people you’re angry with. You’re frustrated with what has happened to your life. You’re tired of not understanding why you don’t feel right, tired of having to explain yourself and tired of discovering that something you once did without thinking now requires an effort you aren’t always sure you have.

Then you lose your patience with someone you love, and when the moment has passed, you feel terrible about it.

Guilt can become an unexpected part of being sick. It isn’t only guilt about losing your temper. You can feel guilty watching your spouse take on responsibilities that used to be yours, or seeing the concern on your children’s faces when they realize you’re having a difficult day. If people at work are covering for you or friends have changed their plans because you had to cancel again, even their kindness can sometimes make you feel worse because it reminds you of how much your life has changed.

After a while, you may notice how often you’re apologizing. You’re sorry you can’t go. You’re sorry you forgot. You’re sorry somebody else had to handle something. You’re sorry you’re not feeling well again.

Eventually, it can begin to feel as though you’re apologizing for something you never chose in the first place.

That can do something to the way you see yourself.

If you’ve always been dependable, it hurts to discover that you’re no longer comfortable making a promise about tomorrow because you don’t know what tomorrow will bring. If you’ve spent your life taking care of other people, having those same people checking on you can feel strange and uncomfortable, even when you know they’re doing it because they love you.

It isn’t that you don’t appreciate the help.

You just never imagined needing so much of it.

And somewhere inside all of that can be the uncomfortable feeling that you’re becoming someone you don’t recognize.

Sometimes What You’re Feeling Is Grief

There is a certain amount of looking backward that comes naturally with getting older. Almost everyone can look at an old photograph and miss something about the person they were then. We were younger, probably healthier and perhaps a little more carefree. Life had different responsibilities and different problems.

Most of us understand that we aren’t going back there.

That’s okay because growing older normally comes with the assumption that life is still moving forward. We may miss being younger without believing that all the good parts of our lives are behind us.

Becoming seriously ill can make looking backward feel very different.

You may not be thinking about who you were twenty years ago. You may be thinking about who you were last year, or even a few months before everything changed. That person wasn’t necessarily younger in any meaningful sense and certainly didn’t have a perfect life. There were still bills, responsibilities, difficult people and days when nothing seemed to go right.

The difference is that you trusted yourself to deal with those things.

Looking back, some of the problems that once seemed so important can almost seem comforting because they belonged to a life in which you weren’t constantly thinking about whether you would be able to get through the day. What you miss isn’t the problems. You miss having enough of yourself available to deal with them and still have a life left over.

That’s why an old photograph can sometimes catch you completely off guard.

You aren’t necessarily looking at your younger face or thinking about how much time has passed. You’re remembering what it felt like to be that person. You’re remembering a time when your health wasn’t occupying so much space in your mind and when tomorrow was simply tomorrow, rather than something you had to wonder whether you would be able to handle.

At some point, you may even hear yourself describing something as having happened “before I got sick.”

There can be something painful about hearing those words come out of your own mouth because you realize that you’ve begun measuring your life that way.

There was the life you knew before this happened, and there is the life you’re trying to understand now.

Nobody necessarily recognizes that as a loss because you’re still here. There was no single moment when everyone stopped and acknowledged what had changed. The world continued moving. Your family continued needing you. Bills still arrived. Birthdays still came around. People went to work, took vacations, complained about their problems and made plans for next year.

Meanwhile, you may have been quietly grieving things nobody else could see.

Not only your health, but your confidence in yourself. Your independence. Your place within your family. Perhaps your career or friendships. Perhaps the simple freedom of waking up without immediately wondering how you were going to feel.

That kind of grief can be difficult to explain because the person you’re grieving is still here.

It’s you.

You Are Still More Than What Has Happened to You

After you’ve lived with this long enough, you may become exhausted by how much space it takes up in your life.

There may be days when you don’t want to answer another question about how you’re feeling because you’re tired of hearing yourself talk about it. You don’t want every conversation with someone you haven’t seen recently to begin with an update on your health. You may appreciate that people care and still wish, just once, that someone would sit down beside you and talk to you exactly the way they did before any of this happened.

Because you haven’t stopped being interested in life.

You can still laugh. You can still care deeply about what happens to somebody else. You still have opinions and interests and things that matter to you that have absolutely nothing to do with being sick.

You may desperately want the people around you to see those parts of you again because you’re trying to see them too.

That’s part of what makes the question “What is happening to me?” so much bigger than it sounds.

At first, it may have been a question about why you didn’t feel right. Somewhere along the way, it became a question about what was happening to the life you recognized and the person you believed yourself to be.

For someone who has been deeply affected, that can eventually lead to a question that is frightening even to think about.

Am I ever going to feel like myself again?

There isn’t an easy sentence that makes that fear disappear, and someone who has been struggling for months or years probably doesn’t need another person pretending there is.

What can be difficult for everyone around you to understand is that you’re not asking to turn back time. You’re not asking to be twenty-five again or to somehow return to a life without bills, responsibilities, disappointments or problems.

You may gladly take some of those old problems back.

What you want back is the feeling that you could handle them.

You want to trust yourself again. You want to make a plan without wondering what kind of day you’ll be having when the day arrives. You want to think about the future without immediately measuring it against how you feel right now.

For someone who has become profoundly ill, even imagining that future can become difficult. When so much of your energy is consumed by getting through today, hope can begin to feel less like something you possess and more like something other people keep asking you to produce for them.

That can be lonely too.

The people who love you may be able to picture you laughing again, working again, traveling again or simply enjoying an ordinary day. They want you to picture it with them because they desperately want it for you.

There may be times when you simply cannot see as far into the future as the people around you can. The people who love you may still be able to picture vacations, family gatherings, going back to work, laughing again and having an ordinary life, while you’re struggling to imagine much beyond the day you’re living through. That doesn’t mean you’ve stopped caring about your life or the people in it. In some ways, you may miss that life so much that allowing yourself to imagine it can actually hurt.

This can be especially difficult for someone who hasn’t lived through a serious illness to understand. People naturally want to encourage someone they love, so they reassure you that everything will work out or remind you of all the good things you still have. Their intentions may come entirely from love, yet what you may be longing for isn’t reassurance about a future nobody can promise. You may simply want another human being to understand how much has already changed and why you’re having such a difficult time imagining yourself on the other side of it.

Because when you say that you want your old life back, you probably aren’t talking about some perfect life that actually existed. You remember the problems. You remember the responsibilities and the days you wished were easier. What you miss is being the person who could live that life without constantly wondering whether you had enough strength, concentration or confidence to get through it. You miss recognizing yourself in the middle of your own life.

Perhaps that’s what you’ve been trying to explain all along. You aren’t asking someone to erase what happened or promise that everything will return exactly to the way it was. You want to know that the person you remember hasn’t disappeared completely, and that there can still be a future in which life feels like yours again.

If that is where you are right now, perhaps the most important thing we can say is that we’ve met people who understand how difficult that place can be. We’ve listened to families struggle to explain it to one another, and we’ve seen how deeply an environmental illness can reach into a person’s life. So when you tell us that you don’t feel like yourself anymore, we understand that you’re saying something much bigger than “I don’t feel well.”

You’re telling us that you miss your life. And we hear you.

@CDC @EPA @WHO @AmericanAcademyofPediatrics @IICRC #MoldExposure #MoldIllness #IndoorAirQuality #EnvironmentalHealth #HealthyBuildings